Launch of Canadian research network makes a big statement about M.E.

Launch of Canadian research network makes a big statement about M.E.

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The Canadian government has announced a modest $1.4 million investment in a new research network and delivered a big message: ME is a serious illness, deserves respect (“Let’s remove the insult from this injury”) and needs more biomedical research. The network, led by Professor Alain Moreau, will set up a national patient cohort that will include objective data on patients’ posts-exertional malaise. It will initially run three studies, including a virus hunt. And it will boost Canadian research capacity, e.g. by supporting the next generation of research talent.

In Quebec, Canada, on 22 August the federal Health Minister, Ginette Petitpas Tayor (pictured above), announced a modest $1.4 million Canadian investment to fund a new ME research network. In a statement, she said the investment “will advance research into ME, work towards developing testing and treatment options, better medical education and, ultimately, better help for patients.”

But this was a research initiative launch like no other. A severely affected patient spoke for longer than the minister herself. The Minister told how she had been moved by the testimony of the patient advocates who came to see her and agreed with them that action was needed. The term “chronic fatigue syndrome” was dropped with the illness instead called just ME, or myalgic encephalomyelitis.

But perhaps the most striking message came from Dr Karim Khan, the scientific director of the government research institute that actually awarded the grant. A clinician himself, he urged his clinical colleagues to “remove the insult from this injury” by validating the experience of their patients and by admitting how little they knew about treating the illness.

No government or its research agency has previously spoken up as loudly in support of patients.

The Interdisciplinary Canadian Collaborative ME Research Network, known as ICanCME for short (I can see ME), will be led by Professor Alan Moreau. It aims to boost Canadian research through its own biomedical research projects, by building a national cohort of patients, and by increasing research capacity across Canada.

Professor Alain Moreau

Let’s be honest, $1.4 million Canadian (US$1 million, £850,000), spread over five years, is not a great deal of money. The US National Institutes of Health (NIH) spends 15 times that on ME/CFS every year.

Moreau, though, is optimistic. “This $1.4 million is just the beginning of something,” Moreau told CBC.ca. “We know we need much more money, for sure, but yesterday’s announcement was a big step for all of us.”

What will the network do?

Little detail about the network was given at the launch itself, but Moreau kindly told me more about the goals of the network by email.

1. A national research cohort, with objective data on PEM

One of the biggest stumbling blocks for researchers is finding sufficient well-diagnosed patients to study, and the network aims to address this by establishing a new national cohort.

ICanCME also wants to make the most of several existing cohorts and clinical databases held in various locations across Canada, by harmonising the information they held. The plan is to agree on common standards for collected information held (such as the questionnaires patients complete), for tests run, and for any biobank sample storage. This will make it much easier for researchers to combine data and associated samples from the different cohorts, enabling larger studies with more robust findings.

We aim to create new knowledge to decipher the ME Enigma”

Professor Alain Moreau, in an email to me.

The key to unlocking the resource will be a central database. Moreau told me the network have been promised valuable expertise and resources by the NIH-funded Data Management and Coordinating Centre (DMCC) LINK. There will also be able to draw on the resources of the UK ME/CFS Biobank and the CureME team, and the Solve ME/CFS Initiative (SMCI).

The common standards and central data platform will also underpin the new national cohort. Unfortunately, current funding will probably restrict it to around 200 patients initially.

New: clothing with embedded sensors will gather data on PEM

Post-exertional malaise is the cardinal symptom of ME/CFS but usually receives little direct attention in research. The new ICanCME cohort will change that.

Moreau already has a post-exertional malaise (PEM) provocation test LINK and will combine this with detailed data on participants’ biological parameters during post-exertional malaise. They can do this thanks to Hexoskin, a private company, which is donating some of its hi-tech clothing with embedded sensors. These sensors measure not only activity levels, but also heart rate, breathing rate and sleep. Participants will be measured at baseline, during Moreau’s PEM provocation test, and around four days later. This is in addition to data/samples collected by Moreau during the testing.

Hexoskin smart kit

Researchers using the new Canadian cohort can combine this PEM data with any data they generate from their own work, potentially leading to new insights.

2. Core research projects

Nearly half of the grant will fund three core projects.

A virus hunt

This study will investigate the idea that specific viral infections, past or present, are associated with ME/CFS. Rather than detecting viruses directly, researchers will use new technology, called VirScan. This detects if a patient has antibodies against any of over a thousand different types of human viruses. The presence of an antibody against a virus indicates that the patient either has a current infection or has been infected by a virus in the past. After fighting off a viral infection, our bodies continue to make small amounts of antibodies against that virus, ready to quickly fend off any future attack from the same pathogen.

So by probing antibodies, this approach can detect not only current infection but also any past infections that might have triggered the illness (a hit-and-run scenario). Dr Ian Lipkin is planning a similar approach as part of his collaborative’s work.

Endogenous retroviruses

Endogenous retroviruses (ERVs) are genetic elements that make up about 5% of our total DNA. They look a lot like retroviruses, such as HIV – hence the name. Most ERVs seem to have no biological effect, but at least some have been associated with disease in animals – and researchers suspect it might play a role in human diseases. Could ME/CFS be one of them? This study will analyse a cohort of over a hundred severely ill patients recruited in Quebec, cataloguing the endogenous retroviruses present and their levels of activity.

ICanCME logo

Genetic and epigenetic risk for ME/CFS

This study also uses a group of patients from Quebec, one where ME/CFS runs in the family. We have two copies of every gene, inheriting one from each parent. Could the versions of genes we inherit explain the family link to ME/CFS? The study will look at both the DNA of the genes themselves and also the “epigenome”, the pattern of chemical modification of DNA (in this case, methylation) that can affect the activity level of genes.

As well as its core projects, ICanCME will also offer Discovery grants to attract new players to the field, inviting researchers and clinicians to propose innovative research projects.

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“Let’s remove the insult from this injury”

Dr Khan

Dr Karim Khan is the scientific director of the Institute of Musculoskeletal Health and Arthritis, the part of the Canadian Institutes of Health Research that awarded the grant to the new network. At the launch, he said he was also speaking “as an MD with 25 years’ experience treating myalgic encephalomyelitis”. Watch his talk here (starts at 25m35s).

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3. Growing the number of Canadian ME researchers

A major goal of the network is to increase the amount of research being done in Canada to speed up progress towards treatments.

Around $300,000 will go to developing the next generation of research talent by funding graduate and postgraduate students who want to work on ME/CFS.

There are also have several Canadian researchers, such as Patrick McGeown, involved as investigators or collaborators in the core projects.

Patients as real partners

Patieint advocate Scott Simpson talking with Petitipas Taylor on the day of the network launch

Patients have a central role in the new network. For example, the network’s executive committee has seven members and three are patients, representing the three national ME organisations. Similarly, patients played a major part in the successful grant application for the network itself – as patient advocate Scott Simpson explained on the Science for ME forum,  the government had insisted on a role for patients. Patients also lobbied the Health Minister herself.

It is worth noting that clinicians also form an important part of the network, alongside researchers and patients.

ICanCME is aiming to make real progress in understanding and treating the illness, through its own research and by boosting Canadian research capacity. Its work is just beginning.

Yet the launch event has already had an impact on many patients – for once, words are speaking louder than action. The message coming from the Canadian government should act as an example to other governments of how to treat ME/CFS. This illness is real, it is serious, patients deserve respect and it needs research action right now.

Image credits: Petitpas Taylor, CIHR; Karim Khan, CIHR; ICanCME logo, screenshot from video of launch; Hexoskin, Hexoskin website; Simpson/Petitpas Taylor, MillionsMissing Canada.

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