Advocacy and Acrimony in the ME/CFS Community

There is a rift in the ME/CFS community. And as tempting as it is to get into the details and vent about it, I’m not going to because I don’t want to deepen the divide. Though if you’re reading this, you probably already know about it or can easily figure it out.

The thing about these types of internal conflicts is that although they’re unpleasant, they’re also indicative of the broader state of the community. We are frustrated and angry, and when no one else will hear us, we sometimes take it out on each other. The frustration shows on our faces, creeping out from within us, pulsing through our fingers as we type out our thoughts.

In many ways, this frustration is counterproductive, but it may also be part of the advocacy process, however unfortunately. It reminds me of a scene in How to Survive a Plague, an Oscar-nominated documentary about the HIV/AIDS crisis. The scene showed a room full of passionate HIV/AIDS activists, many literally dying from the disease, screaming at each other. I don’t remember exactly what they were arguing about, but I suppose that makes a larger point. The collective frustrations in a group are more memorable than any one particular issue that is disagreed upon. Five years from now, heck even in a few months, most of us won’t remember what this latest conflict within the ME/CFS community was about. But it’s almost certain that we will still be frustrated, still angry that we’re sick, still pissed that we’re struggling to get the resources we need.

I suppose this is indicative of something else too. We may disagree on certain things, various issues that may or may not eventually fade to the recesses of our minds, but in truth, we agree on far more things and far bigger things than we disagree on. And ultimately we all agree on the most important thing: the need for a cure. In the disagreements that I’ve had with other patients in the ME/CFS community over the years, I’ve never disagreed with anyone on the fact that our illness needs more research funding and more treatments. These basic needs will never be disagreed upon within the community, and it is especially important to remind ourselves of that when things get heated.

We all have the same goal, some of us just have different ideas about how to get there, and some of us cope with our frustrations in different ways, some unproductive ways. I’ve been guilty of this at times, publicly venting about the egregious fees that doctors charge or verbally sparring with other patients about the best way to advocate for our cause. So I don’t take it personally when someone else does these things, even if to a greater extent. I do, however, wish to quickly get back to a more harmonious effort, a unified chorus that should always prevail, one that can serve to heal any internal fractures.

BEFORE YOU GO… 

1. Thanks for reading! If you haven’t already, please follow my blog.

2. For those who haven’t heard, my memoir, WHEN FORCE MEETS FATE, has a new cover and my wonderful friend Stephanie Land (NYT bestselling author of Maid) has written the foreword to the book.

It is now available for preorder through many online retailers. The ebook should be listed soon and the audiobook will be available for preorder this fall. Here’s a list of places to order the print version (by country):

US: Amazon, Barnes and Noble, BooksAMillion, Book Depository (ships worldwide for free!), BookShop

Canada: Amazon, Kobo (soon)

UK: Amazon

Australia: Booktopia

Mexico: Amazon (Sorry, no Spanish translation yet)

Germany: Amazon

Norway/Sweden: Book Depository

Brazil: Amazon

2 thoughts on “Advocacy and Acrimony in the ME/CFS Community

  1. Hi Jamison,

    I can only recall one controversial subject within the ME/CFS group and I’m not sure this is what you are referring to since you don’t mention it. What I have noticed though for several years is that some people who are labeled as ME do not wish to be categorized with the group that is labeled CFS. I’ve seen it pop up on some ME/CFS sites or FB and so on. The ME people are mostly from Europe and elsewhere from what I’ve seen and CFS is used primarily to designate people from the US with this illness. Seems as though it would be difficult to settle on one term to describe both for some people. I have seen people list some of the differences between the two so called separate illnesses. There are apparently some.

    I’m from the US and I prefer the term ME because Chronic Fatigue Syndrome sounds like something not to take to seriously. It sounds about as severe as having Chronic Itch Syndrome or Chronic Burping Syndrome. The word Fatigue just doesn’t get the message across. Now the terms myalgic encephalomyelitis make you want to stand up and salute something. Sounds quite disturbing and demands to be taken seriously.

    I don’t know if this is such a big controversy or not but if it is it sounds very chauvinistic on the one hand or very childish on the other. What I need to do, which is far more important than worrying about any schisms of this nature, is to somehow enlighten my new doctor who seems to have no knowledge whatsoever about ME/CFS. I was on the phone with him this week and he wondered if exercise would help. I swear to God he did say that. I next explained PEM (post exertional malaise) to him but I felt like I could have been talking to a wall. By the way, I like PEM/ME or ME/PEM. There are all sorts of possibilities and PEM comes a lot closer to one of my worst symptoms from this illness for me.

    Patrick

    Liked by 1 person

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