The 11th Invest in ME International ME Conference (IIMEC11) was held at One Great George Street, just down the road from its former home, on June 3rd, 2016.
You can view the full conference programme (with photos and biographies of the speakers) here. The highly-recommended DVD of the conference is now available for pre-order, and Kina did an amazing job tweeting the conference live for Phoenix Rising.
The first article in this series summarised all of the presentations at the conference. This article reports in more detail on Dr. Ian Gibson’s introduction and Dr. Vicky Whittemore’s keynote speech. Future articles will report further on selected presentations.
10 Years – Looking Back and Looking Forward
Dr. Ian Gibson — Former Dean of Biological Sciences, University of East Anglia, UK
Dr. Gibson’s introductory remarks are always entertaining, thoughtful, positive and highly quotable, and he was in fine form once again this year.
Pleased to see so many old and young faces, Gibson recalled “how young we all looked once” (thinking back to the beginning of his journey in the world of ME) — and “we’re still fighting on … but there’s a new atmosphere around.”
He found the names of the speakers this year interesting — some “sounding like they could be players for Chelsea or Arsenal — some great names there,” even if he didn’t know what they all do …
One of the things that Brits do well, Gibson said, is that we have some lovely buildings, which make for some lovely films for TV. (Buckingham Palace is a very nice place, he noted, and since we’re paying for it, he advised us to get in there and check it out!)
Looking around at the “splendid environment” of our new home at One Great George Street, he congratulated Richard and Pia for moving the conference to a “more friendly place for people with disabilities.”
Richard and Pia do an amazing job, said Gibson. They “have got us here again” and their “energy is completely boundless … you’ve got to keep them quiet sometimes,” but the audience today “shows how much they’re held in esteem.”
Gibson thought back again to “a long time ago”: 10 years ago, when he was a “representative of the people.”
One of his constituents approached Gibson about ME, and he went to visit them. At the time, he thought this was just another problem, like a level crossing, or the woman who had complained to him about rabbits eating the flowers she placed on her husband’s grave. (Gibson solved that one when he discovered that rabbits don’t eat daffodils!)
After encountering two more of his constituents with ME living “in conditions disgraceful for 20th century Britain,” he had set up the Gibson Inquiry.
Doing such a thing is a “fool’s paradise”, he said, “you’ll get criticised whatever you do … but you have to have broad shoulders in politics.”
When you become a politician, he joked, “your family hate you and it extends from there.”
To achieve anything, you have to involve a broad range of people and then start compromising … and the question then is “how far do you compromise until you’re out?”
The report 10 years ago had come in for a fair bit of criticism, and he highlighted a quote: “Whilst there may be some people who may be disappointed that more weight was not given to the wealth of existing biomedical evidence…”
Gibson admitted that the report had compromised — but at the time, he revealed, “certain influential people” would have left the committee if the report hadn’t said something about the psychologists’ perspective “because it would damage their careers.”
Although compromised, the report did say that the MRC should “get off its arse and put some money in.”
In politics, said Gibson, you just sometimes have a “snout” that something is quite important. There are a lot of diseases, he believes, that we need to approach in quite a different way.
Gibson had managed to get a statement from a minister in Parliament (quipping that he’d end up in the Tower if he told us how!)
When the answer to the question of how many ME patients there are in the UK was that “We don’t keep data like that,” he had felt like he wanted to hit somebody. It just showed such disrespect for people who needed support and the government was doing nothing to help.
Gibson reassured us that this issue is being followed up, but 10 years on, sometimes it feels like “we haven’t come on much from that.”
Yet when he took a break from the dismal theme of the political history of ME and turned to the more exciting scientific themes of this conference, Gibson expressed the belief that “we’re in a new dawn in this era now.”
He felt really positive about what he’d seen and heard in the past three days: “it’s moving along, sometimes slower, sometimes fast … people are realising that something needs to be done …”
In terms of mechanisms of political change, Gibson suggested that what we may need is a “Pledge Card.” Tony Blair always used to flash five pledges, he recalled. At least there might be something there that could be used to get people elected, or to push different ideas.
So Gibson offered his own suggestion of five political themes for ME:
- European and International Collaboration
- Substantial Funding
- United Nations
- Centre of Excellence
Gibson has long been a believer in being active in the UN. They do have a statement about ME, he said, but what have they done? He and others have been talking to people in the UN, and he believes they could “get something going of a global nature.”
Gibson and Ron Davis had been talking about the Centre of Excellence concept, in relation to molecular biology, recalling the Crick Institute and Paul Nurse, and the value of opening up labs for people to work together for three or four years.
“Things come out of people working together, arguing together, agreeing together.” It may need several centres, but “things happen when people are working together.”
Regarding education, Gibson said that if medical students get five minutes of education on ME they’re lucky, which is “appalling,” so he’s been talking about that, and the need to focus the wider debate on the real political and scientific issues.
As the scientific work and the collaboration on ME research grows and expands, a conference like Invest in ME won’t die, he reassured us, because you will always need a place where scientists can talk with patients and carers.
And turning his thoughts to carers, he expressed his depth of feeling about them, that “the world is full of people who want to care and don’t get care and support themselves.”
Gibson said he thinks it’s a disgrace, in an era when we’re talking about Mars exploration projects, that a young man has to go to Czechoslovakia for proton therapy, against the advice of his practitioner, to shame the nation into suddenly finding the money to build one in Manchester.
Gibson is “never one who thinks this money’s not around, it can be found if you look hard enough … and everyone here is prepared to shout loudly enough …”
Nowadays, said Gibson, the ME research going on is “not just exciting, but productive,” so “let’s shake the kaleidoscope a bit more” in anticipation of that moment when things “really come together and make that picture … sometimes you have to believe, or nothing happens … and I think sometimes if you don’t ask you don’t get.”
And with that thought, Gibson turned cheekily to our first speaker, Dr. Vicky Whittemore, and asked: “What have you got to offer?”
Keynote speech: ‘A new research initiative into ME at NIH’
Dr. Vicky Whittemore — Program Director, National Institute of Neurological Disorders and Stroke, National Institute of Health, USA
Dr. Whittemore’s presence at the conference rightly generated much excitement well before she arrived, underlining the seriousness of her interest in ME/CFS reearch and signalling her intent to build bridges across the Atlantic and to encourage international collaboration in ME/CFS research.
Invest in ME’s annual conference has already achieved a great deal in these respects, with the likes of Mady Hornig, Dan Peterson and James Baraniuk in regular attendance. The addition of Whittemore and Davis this year must count as a huge win for the entire global ME/CFS community.
Whittemore began her keynote speech by acknowledging how much she had learned over the previous few days, from conversations in and around the research colloquium (BRMEC6, a two-day meeting of researchers preceding the public conference). The value of such communication simply can’t be overestimated.
Dr. Whittemore introduced herself by explaining a little of her personal background. She came to the NIH about five years ago, having been working in the non-profit sector up to that point, focused in particular on multiple sclerosis because her son has MS.
She had worked with several non-profit organizations including the Tuberous Sclerosis Alliance, Genetic Alliance, Citizens United for Research in Epilepsy, and the National Coalition for Health Professional Education in Genetics.
This background perhaps explains why, she said, she has been accused within NIH of being “too much of an advocate,” but she clearly considers that more of a compliment than a criticism!
Whittemore arrived at the NIH when a program director with two small grants related to epilepsy research, who was leaving the NIH, invited her to take them over. Since then, those two grants have grown significantly.
She explained that the NIH consists of 27 institutes and centres — an alphabet soup of organisations — and she works within the National Institute of Neurological Disorders and Stroke (NINDS).
NIH supports both intramural research (studies conducted by the NIH itself) and extramural research. Whittemore is part of the extramural program, involved in overseeing grants funded by the NIH.
She hailed the “new dawn” and the “new vision” for government-funded ME/CFS research in the US — at the same time clearly acknowledging the government’s dismal history in this area.
She noted in particular the Trans-NIH Working Group for ME/CFS, which consisted of representatives from many government agencies — and which had met just once in the last four years. Clearly, she said, there’s a problem there.
The new approach, Whittemore explained, had come about from a convergence of a few factors. Several individuals, notably Ron Davis and Francis Collins, had become impatient with the lack of progress and the lack of understanding within NIH of both the importance and the severity of ME/CFS, and had brought this issue to the attention of the director of NINDS, Walter Koroshetz.
Part of Collins’ steer was to say that an intramural study was needed, and that study is now due to commence this summer, led by Dr. Avindra Nath.
Just 40 individual patients will be studied, with post-infectious ME/CFS of less than five years duration. Although this may seem a small sample, the plan is to start by taking a “deep dive” into the data, then expand the extremely extensive testing to other individuals and institutions and make the data and samples widely available.
Whilst this relatively small start falls well short of the research programme we all believe is required, Whittemore pointed out that the fact that the NIH is at last conducting an intramural ME/CFS study is a very significant and important development.
Another thing that Collins asked NINDS to do was to revitalise the Working Group. This is now happening, under the leadership of Koroshetz, who Whittemore assured us is a “really intelligent and compassionate man” who has cared for individuals with ME/CFS and who understands that it is important. They don’t have to explain that to him, she said.
The Working Group now has representatives from 24 institutes, offices and centres, and Whittemore said she is finding it a really “humbling experience working with these people” who have “really rolled up their sleeves.”
The Working Group has been developing a set of short, medium and long term goals to support and develop ME/CFS research. Whittemore put up a slide detailing the current thinking about these goals, but added that the group also wants to be flexible enough to meet needs as they arise.
Working for the government can sometimes be frustrating in terms of how long things take, she said, but one thing they had been able to do right away was to put out a call (issued April 7th 2016) inviting applications for supplementary grants, through which researchers already funded by the NIH can expand the research they are already conducting (on fibromyalgia, for example) to add in testing relevant to ME/CFS.
Another initiative already underway aims at fostering collaboration, and a Federal Partners meeting on May 24th, 2016 had followed up on the Pathways to Prevention initiative of December 2014, to work out ways to collaborate and move things forward together.
Work is also under way to set some research priorities, and as a part of that effort, a public request for information and feedback was issued on May 24th, 2016. Whittemore reiterated that she had got a “wonderful sense for where things are at” from talking with patients, carers, physicians and researchers at the IiME conference.
She said that it doesn’t make sense for the NIH to duplicate efforts already underway elsewhere, but that she is exploring ways in which they can work together and collaborate with others.
Whittemore had taken a look at how much research had been funded historically, and had found it “pretty shocking and disappointing.” As the ME/CFS advocacy community was already well aware, federal funding for ME/CFS research has averaged about $5-6 million dollars per year. She contrasted that with the figure for epilepsy which is about $156 million, giving a rough indication of the potential room from growth.
Looking at a pitiful bar chart of the historical funding level, she asserted that she hopes that some time in the next couple of years she will be able to come back to the conference and show a level of funding which is “off the charts.” That’s “my hope and my vision”, she said.
Breaking down the funding data by departments, Whittemore showed that NIAID (allergy and infectious diseases) has funded the most ME/CFS research, followed by NINDS and then OD (Office of the Director). Her hope is to both build funding in those departments, and grow the level of funding across other institutes.
The NIH, she said, genuinely wants feedback from the community. It wants to know about emerging needs and opportunities, and where it can best prioritise funding. Acknowledging that she knows the community is asking for $250 million per year of research funding, she cautioned that such a jump in the level of funding is “not going to happen overnight” and that we would have to build to get to that level.
Turning to intermediate goals, she talked about strategies to foster research and build a stronger ME/CFS research capability. A draft RFA (request for applications) had been put together aiming to put a consortium in place for research and data management, a major initiative which will hopefully result in the creation of a network of sites across the United States (based at academic institutions) collaborating on large-scale projects.
Noting that NIH has never yet funded any junior investigators to work on ME/CFS, Whittemore clearly felt strongly about the need to do so in order to encourage the development of young ME/CFS researchers, and to bring new researchers into the field — an issue that Invest in ME itself has focused on in recent years.
Whittemore also emphasised that engagement and consultation with patients, at all stages in the research life cycle, will be a key part of the strategy from now on.
Concluding with some thoughts about the long term goals, she listed the general goals of NIH: to improve the quality of life for all individuals affected by disease, to support the development of new therapies and treatments, to support clinical trials, and ultimately, to improve people’s lives.
She stressed that when talking to people within NIH, she has found that what they want to know more than anything is that the outcomes of research make a real difference to people in their daily lives, and not just improvements in patients’ scores on some test.
Asked about the recent problems with the video feed from the CFS Advisory Committee (CFSAC), which failed completely to broadcast sound throughout both days of the latest meeting, Dr. Whittemore seemed surprised and said she was unaware of the issue.
Another questioner said that there is a need for clinical trials of drugs, but problems with outcome measures, and wondered whether NIH could help people to pool their experience in this area. Whittemore replied that both the Food and Drug Administration (FDA) and NIH had been thinking about this extensively.
The Common Data Elements are aimed at addressing this issue, and consideration is being given to how they might be used in research and clinical trials. Illustrating once again her consultative and global approach, she stressed that the experience of European stakeholders would be helpful in that process, and it will be important to be able to compare the outcomes of research using the same metrics, worldwide.
Charles Shepherd wondered whether the 40-patient study would include people in the early stages of the disease. She replied that she’s not directly involved in that study, but would discuss that issue with him over coffee.