Progress In ME/CFS Patient Advocacy:- Overcoming The Militant Meme & Why We Must Keep Evolving
It is an exciting time for ME/CFS advocacy, we have new voices in the community (including a growing number of experts) and new tools at our disposal to get our voices heard. I’m particularly excited about MEAction.net as it offers a unique platform that provides professional advocacy while also empowering patients by giving them tools to represent themselves. In this piece I want to explore why getting recognition and support for ME/CFS is such a unique and difficult challenge, the importance of evolving the advocacy narrative and take a look at how recent successes have come about.
We, ME/CFS patients know instinctively how ill we are. We push against this disease on a daily basis and the disease pushes back twice as hard. We know that you simply cannot exercise post-exertional malaise out of existence and declare yourself recovered. Were any of those who malign or disbelieve us to spend a week in our bodies, experiencing the fullness of our symptoms, then they would find their opinions quickly converted. But without such fantastical mechanisms at our disposal, translating this experience to a wider audience can be exceedingly difficult.
We are extremely ill, often disbelieved by family and friends, stripped of support, routinely defamed by those who seek to take ownership of our disease for their own agendas and yet, despite that extreme injustice and lack of capacity, it falls on us to campaign from our beds for recognition and research funding. Professor James Coyne recently took some flak on twitter for comparing our struggle to the civil rights movement, but we do actually share a lot of the same problems. In fact we have a unique disadvantage by comparison – we cannot march and we’re lucky if we can get about 1/10th of what a healthy human can get done in a day and often that 1/10th is spent on basic tasks like hygiene and feeding ourselves (some aren’t even so lucky). Some patients grow up in households where their disease experience is denied via inept psychopathology and they are subjected to all kinds of bogus treatments at the request and even enforcement of family members. Some patients like Karina Hansen are even in imprisoned in medical institutions.
Oxford CFS whether intentionally or by accident, is the perfect schematic for oppressing patients with a disease for which medical science does not possess all the answers. It allows for an initial, measurable physical illness to become the event that precipitates a fear of exertion. Every statement from a patient that follows this diagnosis can then be seen as an irrational protective action. In contrast to AIDS, ME/CFS despite a number of outbreaks over the years, is not feared as an infectious disease and it is not feared as a fatal disease. Worse still, if sources that are seen as orthodox are prepared to describe a disease as a challenge the patient needs to overcome, this can be a comfortable belief for a healthy individual.
[pullquote align=”right” cite=”” link=”” color=”” class=”” size=””]The ME/CFS community cannot mirror the actions of ACT UP.
ACT UP itself would have to become something very different this deep into the information age [/pullquote] It is important to note that due to its unique challenges, the ME/CFS community cannot mirror the actions of ACT UP. In fact, I’d argue ACT UP itself would have to become something very different this deep into the information age – where soft power has been refined by the elite to a level at which it can easily de-fang large scale protest. The power that holds sway over how ME/CFS is dealt with is focused in Politics, Media & Academia. Traditionally ME/CFS patients would look towards progressive media outlets to champion their cause – however the Science Media Centre has co-opted the progressive media by painting MECFS patients and advocates as mental health denialists – which in truth has been pretty easy for them to do. Since a lack of mental health funding and recognition is such a huge problem and speaks strongly to the progressive psyche, the deeper issues in MECFS have been locked out of the mainstream media.
It does not take long on the internet to find patients (regrettably, including myself ) making statements like “I’m not crazy”, “Psychobabble”, “x doctor is a quack”, “it’s not all in my head”. These statements are so easily bent into a narrative of mental health denial. Of course the truth is, you can actually be politically incorrect and oppressed at the same time. But it is the intelligentsia that fill parliament seats, wield power in academia and preside as taste-makers over a reading and listening public. Those that hold such positions will be subject on a daily basis to angry letters from people who disagree with them and so a well crafted narrative about unruly detractors becomes an even more appealing read as it offers indirect sympathy for what they perceive as injustice.
The result of this narrative is that patient forums and social media groups can become as much a curse as they are a blessing. I do not begrudge the right to some hearty political in-correctness when letting off some steam. How could this disease not make people angry from time to time? The disease itself does not imbue us with media training and a perfect grasp of PR. But the truth is, while forums and social media have allowed us to exist outside of our darkened rooms, they have also provided our oppressors with an unending backlog of press-ready quotable quotes.
When I was a younger patient experiencing that anger, lack of belief and utter despair, the chorus of anger proved a little too appealing and blinded me to both objectivity and subtlety. Polar narratives of heroes and villains, of absolute support and suspicious rejection are simple and gratifying. There are doubtless perpetual agitators in the ME/CFS world, but they exist in a system that takes your anger and uses it as a sword against you. Whatever injustices may have been committed against us as patients, nothing is more important than searching for the causes and cures for ME/CFS. Anger must be secondary to positive and effective action. Never underestimate the power of your lone voice and the effect it can have on the strength of our cause. Persistent, thoughtful and considered voices of several advocates over the course of a few years, rescued me from the blindness of my own anger. I cannot overstate how extremely important for those considered voices to boom out and echo as they really do make a difference.
The recent support of Professor James Coyne in tackling the glaring problems in ME/CFS research by challenging the establishment from within, cites in particular two patient advocates – Tom Kindlon (Citizen Scientist) and Julie Rehmeyer (Journalist) for his involvement. Tom has taken it upon himself to follow the literature on ME/CFS as closely as his illness allows him and his responses which expose the problems and inconsistencies in ME/CFS research are frequently published in major journals. Julie Rehmeyer is an award winning, well published journalist who has mastered the art of writing respectful, fair and accessible articles that challenge and summarise issues surrounding MECFS. (Rather absurdly, after I finished planning this piece, Rehmeyer finds herself under fire for talking to Brian Walitt at the NIH, who is known for his highly questionable views on ME/CFS. I should point out, it is when a journalist refuses to observe both sides of the line that their credibility is damaged).
The collective narrative must evolve. Just like graded exercise and CBT, the efficacy of unfettered anger and suspicion does not have a credible evidence base. As an example, the disease definitions used to recruit patients for ME/CFS research have become dangerously over-politicised. The use of the Fukuda or even Reeves criteria is not an act of disability denial. It is not the wideness of the criteria that matters but rather what data is logged and how it is used. A wide criteria could actually help in research to create control groups based on different signs and symptoms. Linda Vansteenwinckel rightly pointed out to me that some signs of the cause of ME/CFS may only be observed during certain phases of the illness. There are already studies that have shown different findings based on illness longevity.
[pullquote align=”right” cite=”” link=”” color=”” class=”” size=””]Anger is justified but, anger can be used against you[/pullquote] If we take Myalgic Encephalomyelitis at its basic meaning – brain and spinal cord inflammation, then it’s not difficult to imagine different causes, symptoms and severities. Being over specific in the short term could compromise the quality of research. If ME/CFS is a post-viral response, can it be caused by more than one type of virus? What effect does this have on symptoms and severity? If ME can also caused by toxins or intestinal problems, again the experience could vary. Could in some cases, PEM be sporadic rather than perpetually sustained? Is this a reason why some people recover and others do not? Science is not about disability denial – even if it has been used to that end at times. It is important that research is of good quality and documents the real, painful and tragic symptoms suffered by ME/CFS patients. This is ultimately far more important than over-politicising diagnostic criteria. Even a paper that uses the weakest Oxford criteria could prove useful if the right data is collected.
Anger is justified but, anger can be used against you. Anger can be misplaced or anger can be the flame that fuels the kind of passion that brings about great change. If it is to be used for good, then it must be used carefully and all of us in the community have a responsibility to promote that message. I know that years of neglect and oppression have led to mistrust and I know that in the future we as a community will be subject to actions that are worthy of that mistrust. But the injustices against us do not grant us any sort of immunity in the public eye. When all is said and done, history will note, “No wonder these people were so angry”. Right now, to a lot of the people who hold power over our lives, we’re just angry people.
Editor’s note: What do you think? What are the benefits and the dangers of anger? How can we best use our anger and where do rightful outrage and strategy meet?