Day 3 Report

By Jen Temm – Emerge Australia Journal Editor & Carer

“The answer is here in the room” – Professor Brett Lidbury summed up the conference neatly in his research report to a room full of patients, carers, advocates, and a supergroup of researchers and clinicians. While we don’t have the full picture of the biological jigsaw puzzle that is ME/CFS, it’s tremendously reassuring to know some key pieces are falling into place thanks to the critical work being done by the researchers in attendance.

Along with thousands of others I watched the researcher sessions on livestream before heading to Geelong for the final patient day with talks from specialist clinicians and keynote speaker Dr Ron Davis, research summaries, and Q&A sessions. The addition of this day for patients – along with a dedicated quiet room and the livestreaming – spoke volumes about Emerge Australia’s dedication to the patient community. And that sense of community and sense of change was palpable in the conference room, with the Federal funding behind the event, the collegial atmosphere and emphasis on research collaboration, the informal talks and meetings occurring the official events, and the keen interest of the international ME/CFS community.

Dr Mark Donohoe

Outspoken Sydney GP Dr Mark Donohoe kicked off strongly in spite of a bout of food poisoning blamed on a recent dinner of crab linguine. Last seen on SBS Insight’s show on ME/CFS in October, Dr Donohoe has a personal connection to ME/CFS, like many of those present, after suffering a “fatigue-like illness” in the mid-‘90s for 18 months. He started working with patients with chemical sensitivities in 1985, and is widely recognised as a leading ME/CFS specialist GP [slide 1].

Dr Donohoe referred extensively to Dr Daniel Peterson’s presentation slides from NCNED’s ME/CFS conference in November last year. The American physician is the president of Sierra Internal Medicine at Incline Village in Nevada (the site of the 1984 outbreak in the Lake Tahoe region) and had given an overview of diagnosis and symptomatic management of ME/CFS in the US, a consensus-based approach drawn from polling specialist practitioners with a combined 300 years of experience with ME/CFS.

The detailed slide presentation in Dr Donohoe’s talk is worth viewing with the caveats that many of the drug therapies suggested are unavailable in Australia and are often last-line drugs or are only available in institutional settings. The recommendations don’t include simple lifestyle and gut management tips he routinely recommends around diet, probiotics, gentle exercise and stretching, drinking plenty of water, and work-place and school modifications.

Issues around care and support were particularly worth highlighting out of the many points Dr Donohoe raised.

“It’s as real as any other illness and just because it’s unsolvable does not get my permission to allocate you to the garbage bin of medicine, we call it psychiatry. At that point, you’re in trouble,” he said. Doctors had to validate a diagnosis of ME/CFS not just for patients, but also for their families and their communities including friends, teachers, and colleagues, because it’s a disease of isolation.

“At worst, the family starts to doubt the person is sick and the family withdraws,” he said. “It’s like a bee in a colony – once you’re alone this is not a manageable illness whatsoever. The community around that person needs to be supportive for there to be any chance of recovery – I’ve never seen a person recover, isolated from all of their support structures.

“And the social needs and assessment need to be there. NDIS is a catastrophe – it is, balls-up, a catastrophe.” He related the story of a friend who works as a lawyer for the NDIS who told him over dinner, “There’s 300,000 paid for, there’s 1.2 million that we can’t afford. The government’s doing a trick to take the funding away to make the budget look good this year, so it dumps Labor with a $10 billion black hole in two years’ time to win the election after that. Bottom line is, we’re not giving anyone any more money. Those people screaming will be the next government’s problem.”

He further called on the Australian community and organisations to build a consensual evidence base for the diagnosis and treatment of ME/CFS, and to make submissions to the Medical Board of Australia’s current public consultation on the practice of complementary, unconventional and emerging medicine.

“The Medical Board of Australia may make this entire conference relatively moot,” he said. “It would mean no prescribing off-label, no compounding pharmacy, no intravenous, no breaking of the skin for any purposes outside orthodoxy. The group of doctors they’re calling out are complementary and unconventional – and being unconventional in a world like this is not a bad thing.”

Dr Bruce Wauchope

South Australian GP Dr Bruce Wauchope trained in tropical medicine and has a lifelong interest in infectious diseases. He worked with displaced people from Cambodia after Pol Pot’s regime under the United Nations Border Relief Operation (UNBRO) and while working in the camps, developed algorithms that allowed health workers to manage patients without need for advanced investigation. He became interested in ME/CFS after one of his children became ill with the condition, and developed a layered, targeted, problem-solving process in diseases that are not medically classified. This enabled the creation of algorithms for managing ME/CFS, which was the main topic of his talk.

Similarly forthright and an animated speaker, Dr Wauchope also encouraged community groups to support doctors in the Medical Board of Australia’s crackdown: “We’re not justifying cranks but there’s biomedical doctors trying to help your people who should be protected.” He further called for protests to the Royal Australian College of General Practitioners (RACGP) for its “malpractice” in recommending Graded Exercise Therapy on its website: “We all know, and you can prove it biochemically, it makes them worse. The PACE study is fraudulent. It’s hurting people around the world and it needs to be taken off the RACGP website.”

In his presentation Dr Wauchope focussed on the integrative program he is developing as a means to multiply the knowledge base that he, Dr Donohoe, and others have accumulated over their years of experience to assist ME/CFS patients who cannot access specialist medical care (Dr Donohoe also raised this in his talk, saying that of the 300 doctors at a ME/CFS conference in 1995, only 80 were still working in the area). For Dr Wauchope, a serious head injury from a recent accident has also greatly limited his capacity to work, and added urgency to the project.

Developed with the Bridges & Pathways organisation in South Australia, the program is a diagnostic treatment pathway for use in any clinic, co-ordinated through phone-based apps for the many patients who are house- and bedbound, and designed to work within the busy frame of general practice and accommodate the complexities of ME/CFS.

It will incorporate new research findings as they develop, and look at areas including the body’s biochemistry, genetic issues, mitochondria, the gut, exposure to toxins and infections, and establish recording and monitoring of each patient to check on intervention outcomes [slide 2].

“The thing is, I’m getting grey and Mark’s getting old,” Dr Wauchope said, to laughter from the audience. “Seriously you’ve got to think about this. Where’s the young ones? So I’m speaking to the doctors of the future: I’m telling you there’s a way forward. I’m on a mission to get this out and I’ll be integrating it as much as I can.”

Professor Ron Davis

After a feisty clinical Q&A, research summaries and a lunch break came the emotional heart of the conference, keynote speaker Professor Ron Davis. The affable and avuncular professor of biochemistry and genetics is the director of the Stanford Genome Technology Centre and the director of the Open Medicine Foundation (OMF) in the US.

Speaking on establishing new mechanistic and diagnostic paradigms for ME/CFS, Professor Davis opened with an expression of sympathy to Australian patients who are given the “appalling” advice to exercise as a treatment: “I usually advise them to say, why don’t you go back and use leeches, it will probably do less harm. It has about as much credibility as exercise does in solving this disease”.

Dr Davis’s presentation took a poignant turn from the start as he spoke of his dedication to finding a cure. His personal stake in solving ME/CFS revolves around his severely ill son, Whitney Dafoe, and he shared stories about his terrible isolation. Whitney has been bedbound for six years; he can’t eat and is fed by J-tube, he can’t read, talk or bear smells, and is extremely sensitive to noise. He listens to white noise through ear buds so he can’t hear anything else – even bird song is painful [slide 3].

Whitney gets temporary relief from Ativan, a benzodiazepine medication that gives him a few hours during which he can communicate by sign language, or cope with a bedding change or a hospital visit. In a heart-wrenching moment, Dr Davis said Whitney had recently communicated his willingness to share pictures with a promise not to commit suicide: “He said, ‘When people get to see me they realise that one, you can get a lot worse and two, if I don’t kill myself other people won’t either’. I consider him a real hero. And what he’s going through on a daily basis is incredible, living like this year after year”.

Dr Davis touched on many diagnostic and treatment approaches including the recently published OMF-funded red blood cell deformability study and some early research results in his 45-minute presentation. Of particular interest to many is his search for a biomarker and the development of tools to gather research data such as the nanoneedle device that measures electrical impedance in cells and molecules. In the first nanoneedle experiment sodium chloride was added to stress the blood samples of healthy controls and ME/CFS patients, and showed a clear difference between the two [slide 4]. “The probability that you could get this from random chance is 10 to the minus 9, so it’s better than the lottery. Every patient shows this response, no healthy control shows it,” he said.

Another encouraging approach is adapted from cancer research and measures the density of cells using magnetic levitation [slide 5]. The slide shows a year’s worth of analysis of Whitney’s white blood cells which are almost consistently lighter than they should be compared to the healthy reference – except when he developed a fever following an infection and actually improved for a short time.

Metals analysis and environmental exposure was another fascinating topic, and also discussed by other presenters including Dr Bruce Wauchope who found elevated levels of cadmium in Australian patients. Dr Davis’ studies have found high levels of uranium in his Californian patients among other abnormalities. “What’s interesting is that every time you have a heavy metal you have low levels of selenium and I think that’s because selenium binds to the heavy metals,” he said. Selenium is critical to a number of metabolic processes including the production of energy.

With funding, prevention of ME/CFS is next on his research-to-do list, Dr Davis said. One area that has caught his attention is the conversion of viral infections to ME/CFS, for example after glandular fever where up to 10% of patients with the Epstein-Barr virus then contract ME/CFS. “That’s a very high and scary number,” he said. “I would love to work with some physicians to think about that, that’s too high a number to just ignore.”

Dr Jarred Younger

Dr Jarred Younger [slide 6] is director of the Neuroinflammation Pain & Fatigue Laboratory at the University of Birmingham in Alabama and, via video, presented some of his latest and very exciting findings including his recently published brain inflammation work. Using magnetic resonance spectroscopy this study found signs of neuroinflammation through different regions of the brain, particularly lactate, which is not normally seen in the brain and is usually produced when excessive activity overwhelms the blood’s ability to get oxygen to that region.

The number one symptom caused by the chemicals produced from brain inflammation is profound fatigue. “We don’t know if the brain inflammation is the cause of the problem or if it’s the result of the problem, and it’s important to figure that out,” Dr Younger said. His next studies will focus on why people with ME/CFS have brain inflammation and what they need to target to reduce symptoms or reverse the disease.

Recent funding from ME Research UK will be used to test the hypothesis that T-cells and B-cells, the body’s immune cells, are crossing the blood-brain barrier and causing inflammation in the brain, while a positron emission tomography (PET) study will look at microglia, the brain’s immune cells, to find evidence of dysregulation.

An ongoing blood study links inflammation in blood to patient fatigue ratings and has produced a mountain of data which now needs to be analysed and interpreted, and should produce several new papers this year. Dr Younger said he’s expecting conclusions that will allow the separation of ME/CFS into distinct groups based on the inflammation type, for example whether the problems are infectious, autoimmune, immune dysregulation, or possibly from hormonal or neuropeptide issues.

“This process will allow us to separate the overall ME/CFS population into subgroups,” Dr Younger said. “I think that’s going to be really important, and you probably hear other people talking about that because it is very, very unlikely that everyone with ME/CFS is suffering from the same problem.”

A final group of studies are clinical trials, and the team is currently seeking funding for studies such as non-invasive nerve stimulation to correct parasympathetic and sympathetic nervous system imbalances and calm down brain inflammation, and to test devices that could cool overheated ME/CFS brains to reduce inflammation and possibly correct symptoms. A trial for fibromyalgia which calms down the microglia, the brain’s immune cells, and reduces inflammation, and a study of botanical anti-inflammatory agents for Gulf War syndrome including stinging nettle and curcumin, also have significance for ME/CFS.

“This year in particular will be a very active year because we’ve spent the past four years collecting data and now it’s time to get all that information out so you should see a lot coming out from us,” Dr Younger assured the conference audience. “We’ve got some very good leads and were going to follow those out, see what’s most important and really try to get out those diagnostic tools and those treatments so physicians have something to work with, whether it’s a primary care physician or a specialist.”

Anthony Clarke, BLOXAS, and Anna Kerr

The final presentation for patient day was a little different but similarly offered a strong patient focus. Anthony Clarke of Melbourne based architects BLOXAS and patient Anna Kerr discussed empathic design and ME/CFS, looking at how architecture can better accommodate the needs of ME/CFS patients [slide 7].

Bloxas has a history of designing spaces for specific illnesses including commissioned projects for families with autistic children, dementia patients, and those with chronic sleep disorders. Mr Clarke and Ms Kerr met at a screening of Unrest last year after he became interested in ME/CFS while designing a home for South Australian patient Taylor Ryan. He has been working with Emerge Australia to run design studies around the illness in an effort to understand the limitations on patients and what role architecture can play, with an ultimate goal to develop a dedicated health clinic in Melbourne for ME/CFS patients.

At last, to quote Emerge Australia’s Sally Missing in her moving closing address, things are beginning to change and there is momentum: “There is so much more to be done to reduce the stigma and misunderstanding of our condition but we are on our way. It is only though raising our voices that change can happen”.

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Clinical Q&A

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The ME/CFS International Research Symposium is run by Emerge Australia and funded by the Australian Department of Health’s generous 2018/2019 grant. Visit Emerge Australia for more information, news and updates.

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