The Long Arc of Chronic Fatigue Syndrome (ME/CFS) Advocacy

by Cort Johnson | Mar 17, 2016 | Advocacy, Homepage | 49 comments

As we appear to be finally turning a corner at the federal level, Prohealth’s Advocate of the Year Award gave me the opportunity to sit down and reflect on the long arc of ME/CFS advocacy. That made me realize how dependent the successes of the present have been on successes in the past – many of them long forgotten – and how our successes (or failures) will affect those that come after us.

Thanks to Prohealth for allowing Health Rising to reprint the original blog.

______________________

Congratulations to Cort Johnson for winning ProHealth’s 2015 ME/CFS Advocate of the Year Award! The award is given to an advocate who has dedicated him- or herself to furthering the interests of the ME/CFS community, and who has made a significant impact on public awareness of the disease.

Cort Johnson has been active in ME/CFS advocacy for over a decade. He founded Phoenix Rising, which is currently the world’s largest forum for ME/CFS sufferers, providing much needed information to – and from – the community. In 2013, Cort founded Health Rising, which is a valuable source of breaking news on research and advocacy efforts, as well as providing encouragement to people suffering from the disease. Over the past 10 years, he has written hundreds of articles about ME/CFS on his own websites and elsewhere.

ProHealth Advocates of the Year receive a ProHealth gift certificate of $500 and $1,000, which may be donated to the charity of the recipient’s choice. Cort chose to donate his award to the Simmaron Research Foundation in recognition of their important spinal fluid study, which is being conducted in collaboration with Ian Lipkin.

Cort has generously written a “State of the Union” article about where ME/CFS advocacy efforts currently stand, as well as a little of the history behind the movement. We are sure you will find it enlightening.
____________________

By Cort Johnson

Thanks to Rich Carson and ProHealth for this award.

A Fair Name and a Campaign

I want to acknowledge and thank Rich for his personal support and support of Health Rising since it opened about three years ago and for his own work in the advocacy field as well. It was not that long ago, in considerably darker times for ME/CFS, that Rich created and funded the Fair Name Campaign. The intention of the campaign was to have chronic fatigue syndrome be called ME/CFS. We believed ME/CFS was a good transition name which embraced the past of the disorder while looking towards the future.

ME/CFS is fully integrated into the community and the NIH. Moving beyond ME/CFS is the next step.

During the campaign we tracked the use of the term ME/CFS over time. If I remember correctly it was first introduced in a significant way in the Canadian Consensus Criteria. From there it started to slowly work its way into research papers, often found in smaller journals, produced by ME/CFS experts.

The Campaign brought together ME/CFS experts who embraced the name change and publicized it. Change was in the air and the patient and professional communities, including the International Association of Chronic Fatigue Syndrome (IACFS) (now IACFS/ME), quickly adopted it.

Then Dennis Mangan, the leader of the NIH effort on ME/CFS, without seeking advice or permission from the NIH, took it on. Later he said that asking permission would have slowed the process down considerably and perhaps even derailed it.

Dennis’s proactive move illustrates the fact that at times specific people do matter and people in positions of power in medical institutions, particularly matter.

The name change campaign also reflects how much further we have to go. None of the major medical websites or the CDC has followed the NIH’s lead. Google Trends indicates that the term ME/CFS only started showing up significantly in US searches in January 2014, and the term chronic fatigue syndrome is still used 30-40 more times in searches than ME/CFS.

The situation is better in the UK, where the term ME/CFS is used about 5-10 times more. Myalgic encephalomyelitis, interestingly, is used in more searches than ME/CFS in both the US and the UK. Interestingly, myalgic encephalomyelitis suddenly jumped in search popularity in the UK in January, 2009, and ME/CFS did so in July 2012.

Setting Up Chronic Fatigue Syndrome (ME/CFS) for Success – Fifteen Years Ago

It looks as if the desires of the patient community may be finally coming to fruition at the NIH. That success seems as if it’s the result of two recently published federal reports, but the roots of that success stretch back 15 years or more. Without advocacy efforts the reinvigoration of ME/CFS research at the NIH probably wouldn’t have happened.

Actions taken long ago – which for years seemed not to make much of a difference – ended up being critical to today’s success.

It dates back to the success advocates had in embedding ME/CFS in the federal infrastructure. It was a success that appeared for almost 20 years, not to pay off at all.

That success was the adoption – the very unusual adoption – of a federal advisory group (CFSAC) focused on one disease. (Very few advisory groups focus on a single disease.) The federal advisory group had little impact on the major issues facing ME/CFS. The panel wasn’t useless; for many years it provided a platform which gave the ME/CFS community access to federal officials and vice versa. Officials that came into contact with the community learned about ME/CFS. Even as research funding declined, CFSAC was there, providing a steady stream of recommendations to the federal establishment.

The most important recommendations were always ignored, but then CFSAC did a small thing which may have made a big difference. Instead of simply sending a batch of recommendations every year, they prioritized the top recommendations. That apparently prompted two DHHS officials on CFSAC to, without the panel’s knowledge, commission two federal reports in response to them. Ironically, both the professional and patient communities fought the reports, but the IOM and P2P reports ended up making a huge difference.

Outsiders took a close look at ME/CFS and agreed something must change. They provided allies within the NIH an opportunity to act.

The federally funded reports gave two figures the opportunity they needed to act. One was Vicky Holets Whittemore, who is the National Institute of Neurological Disorders and Stroke (NINDS) liasion to the moribund Trans-NIH Working Group. The Working Group had accomplished little over the past 15 years, but it did get Vicki Whittemore into the game.

Without a working group for Whittemore to sit on it’s hard to see how she would have gotten involved in this disease. When the IOM and P2P reports were published, Whittemore apparently saw her chance and began lobbying NINDS for an increased effort on ME/CFS.

Meanwhile NIH director Francis Collins was encountering demands for change. The publicity the IOM report received made the report difficult to ignore. Collins – who had expressed some interest in ME/CFS earlier – apparently decided it was time for a major change.

ME/CFS had had no success with the past Director of NINDS or with the longtime director of the NIAID, but a fresh face, Dr. Koroshetz, who apparently had some acquaintance with the disease, now led NINDS. In the end, it appears that individuals (Collins, Koroshetz, Whittemore) – all of whom were apparently receptive to ME/CFS – were present at the time the IOM and P2P reports were published.

Three Important Tools

In the end, ME/CFS had three important tools in its advocacy basket that the other diseases did not have. It had an entree – as weak as it was at times – into the federal establishment called CFSAC. As difficult a time as CFSAC has had over the years it’s hard to see the progress of the last year happening without it.

ME/CFS had a Working Group that kept federal officials engaged with ME/CFS long enough for a champion for this disease (Whittemore) to emerge.

Today's advances were set up wins fifteen years ago

Today’s advances were set up by wins fifteen years ago that gave us an in to the federal establishment

It also has a Special Emphasis Panel (SEP) to evaluate ME/CFS research grants. Getting a rare disease specific grant panel for ME/CFS was another coup. That panel, which was largely staffed by pain experts, seemed at times to do more harm than good, and ME/CFS researchers railed against grant reviewers who knew little about the subject and failed to support their grants.

The ME/CFS grant panel now may reap huge dividends, though. Jennie Spotila’s reporting indicates that the grant panel makeup now consists almost wholly of ME/CFS experts who can be expected to approve good grants. All the panel needs at this point is for those grants to appear.

It’s clear that the successes of the present have built on the efforts of past advocates who recognized the need to get embedded into the federal infrastructure. It simply took a long time for their work to come to fruition. One clear lesson learned is to never give up a stake in the federal establishment.

A Constant Theme of Advocacy

We have a long history of distrust towards the federal government. I would assert that our problems are not the result of a conspiracy against ME/CFS but arise from a kind of institutional blindness towards ME/CFS and similar diseases.

We’re not alone. The same kind of neglect has been perpetuated against a raft of diseases which mostly afflict women, cause high rates of pain and fatigue but usually do not kill, which are complex and difficult to understand, and are poorly funded. These diseases, which include chronic fatigue syndrome, fibromyalgia, irritable bowel syndrome, migraine, interstitial cystitis, temporomandibular syndrome can all be found at the bottom of the NIH funding barrel.

The inability of migraine to achieve traction at the NIH is noteworthy given how many people it affects, how much economic distress it causes, and how long the medical profession has been dealing with it. Migraine gets substantially more funding than ME/CFS or FM at the NIH (about 24 million a year), but it is much more prevalent. This indicates that even a common, well-characterized disease can be ignored.

Why is movement happening at the NIH but not with other diseases? Why does a sense of excitement now exist around ME/CFS that you can’t find in the migraine or FM communities? I would assert that advocacy may be the reason. It’s hard to find evidence of migraine or fibromyalgia advocacy on the Internet. If you’re interested in chronic fatigue syndrome, on the other hand, it’s hard not to bump into advocacy blogs and discussions.

This is not to say that ME/CFS advocacy has been effective or well-organized – it hasn’t been – but advocacy has always been a major theme. I would guess that the ME/CFS community as a whole knows the state of its funding levels better than any other disease community.

The answer to the question of why some diseases such as migraine and fibromyalgia, despite their far larger patient populations, have mounted such feeble patient advocacy efforts is difficult to answer, but sometimes it may simply come down to individuals.

Kim McCleary of the CFIDS Association of America and other advocates of the time made getting embedded in the federal infrastructure a priority. Hilary Johnson’s “Osler’s Web” deeply affected a generation of ME/CFS patients. Tom Hennessey began International ME/CFS day. Somebody – Vicky Whittemore – at the NIH picked up the ball for ME/CFS. Two people at CFSAC got the IOM and P2P reports underway.

Despite the problems with exertion present in ME/CFS, the community has been very creative. Two films, The Forgotten Plague and Canary in a Coal Mine are coming out of the ME/CFS community. Joey Tuan’s AnyTreatment and Joshua Grant’s Mendus are two recent examples of creative web efforts.

The MEAction website was the result of the work of two individuals, Beth Mazur and Jen Brea who were dedicated to empowering groups. The Microbe Discovery Project raised over $200,000 dollars to fund Ian Lipkin’s microbiome research. We sometimes take The Solve ME/CFS Initiative’s webinar series for granted but no such series exists in the fibromyalgia or migraine communities. ProHealth is a supplement company with a twist; it’s always been a major information resource that highlights non-supplement research. I don’t know that there’s another supplement company on the web that does that.

The IACFS/ME holds international conferences every two years that bring researchers together and excite patients. Invest in ME holds conferences yearly. Despite having double the funding and 10 times the patient base, I can’t find any evidence of a major FM conference. Why do they happen in ME/CFS and not fibromyalgia? I don’t know, but I’m glad to have them in ME/CFS.

The point is that the ME/CFS community, for all its problems with energy and funding, has been a particularly fertile one.

US Action Working Group

We complain about the infighting and the arguments and the sometimes heated debates within the chronic fatigue syndrome community, but those are signs of an active patient community.

Advocacy has been a recurring theme in the ME/CFS community for as long as I can remember.

This is not to say that we’ve been particularly effective advocates – we can do much better – but that I think is changing, and one reason it’s changing is the recent formation of the US Action Working Group. The US Action Working Group is dedicated to producing a strategic effort to increase and sustain ME/CFS funding and support in the federal arena.

The group was a possibility waiting to happen. After the IOM and P2P reports, everyone knew tthat we needed a group. Everybody knew that it was time for such a group, but the months went by and there was no group. It took one person – Carol Head – the President of The Solve ME/CFS Initiative – to pick up the phone, so to speak, and say let’s get together and see if we should form a group.

The US Action Working Group contains a variety of people with wide and deep interest in advocacy. Mary Dimmock brings probably the most detailed understanding of anyone of the history of ME/CFS.

Bob and Courtney Miller have established personal relationships with many key players in the federal government. Bob’s ability to confront federal officials while keeping the lines of communication open is critical. His personal insights into the people working on ME/CFS at the federal level are incredibly valuable.

Carol Head, Charmian Proskauer, Lily Chu, Jennifer Spotila, Christine Williams, Diane Bean, Billie Moore and others bring knowledge gained from working at the local and federal levels to the group. If it wasn’t for Jennie catching a deleted item in the federal budget, the CDC program might have gone under.

Earning Trust

After so many years of neglect, it will take time for the federal government to earn the ME/CFS community’s trust. The crucial element, of course, is funding. Funding also happens to be the most difficult element to achieve.

I would argue, though, that the federal government has shown signs of at least being able to listen and adjust its approach. At the CDC, a new willingness to listen and adjust showed up when Elizabeth Unger took over from Bill Reeves. Unger set up meetings with patient organizations and worked with CFSAC members to modify the notorious Toolkit. (I would argue that the multi-site study is essentially a deep listening project aimed at ME/CFS experts and patients)

The FDA’s Patient Workshop put the FDA in listening mode – a mode they acknowledged they learned a tremendous amount from. When concerns arose regarding the makeup of the IOM panel, the IOM adjusted and expanded the content section of the panel and filled it with ME/CFS experts. The Feds did not listen, thankfully, when advocates called for the end of the IOM and P2P reports but the reports showed that people without a background in ME/CFS could understand the illness and show strong support.

The feds have been listening…

Most recently, the NIH has, apparently due to patient concerns, removed the Functional Dystonia group from the Clinical Center study. They are creating clear lines of input from the patient community to the Trans-NIH Working Group and are regularly meeting with advocates.

We can no longer say that the feds are unresponsive or are not listening to the ME/CFS community’s concerns. They may not do everything we want, but they’ve shown flexibility and a willingness to change on many occasions in the past few years.

The big issue, of course, is funding. We’re off to a good start in that area with several new grants funded and a very expensive and comprehensive study underway at the NIH’s Clinical Center, but getting really significant funding is the most critical and difficult step.

I remember how stunned I was when I found out how little attention was being given to this disease. I had naively assumed that if I and others were so sick, there must be teams of people working on finding out why. The feeling of abandonment by the people I had counted on to help me and others was profound. I struggled and continue to struggle to come to terms with the cruelty of a system that allowed so many ill people to be ignored.

I came to the conclusion that the system is not fair, that it, like so many other systems is simply very flawed. There is no mechanism in place, for instance, to ensure that sick people are taken care of. It’s a system that places more of a premium on researcher interests than patient needs. It’s a system that rewards well-known diseases and handicaps emerging ones. It’s a brutal system to get lost in.

Diseases that have gotten little attention do break through. Hopefully that is what we are seeing with ME/CFS. A substantial boost in funding, and even more so significant research findings, will finally allow us, I think, to let out a collective sigh of relief. May it be so!

49 Comments