Advocacy Coalition: A Day Late and a Hundred Million Dollars Short

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Yesterday was International ME Awareness day and, for the most part, I missed it. I didn’t participate as masses of people with MECFS and an advocacy coalition of organizations protested a lack of research funding for the illness.

In years past I’ve participated with the MECFS advocacy coalition by writing blog posts and being active on social media, pestering politicians for the $100 million dollars in government research funding that we need and advocating for patients with MECFS. But this year I didn’t have my act together. It may have been because of the pandemic or it may have been because I’ve just lost hope lately.

The truth is it’s hard to be hopeful that a cure for MECFS will be found when the entire world is looking for a cure for a different illness.

Even so, some people have made the case that the COVID-19 pandemic will actually benefit people with illnesses like MECFS, that research may show that the coronavirus causes or contributes to lasting post-viral symptoms that are hallmarks of MECFS. And there may be something to that. I hope there is. It would almost certainly mean more research funding for MECFS, more treatments, and maybe even a cure. But that’s hard for me to imagine. I want to be that optimistic, I really do, but I’m also tired of getting my hopes up. I’m tired of thinking something will be a breakthrough and then watching it turn into a dud.

In the decade that I’ve been sick there have been countless times when I’ve put all of my faith in a potential breakthrough only to see it fizzle. Some of these things have been realistic, others have been far fetched, but they all have been failures.

A couple years ago, for instance, someone in the MECFS community went on Facebook and started posting about a new drug that was in clinical trials and he was sure it was going to be the answer for patients with MECFS. The drug proved to be inefficacious, but the worst part wasn’t that my hopes had been crushed, it was that hundreds of people likely saw the post and latched on to it for hope like I did. It’s a vicious cycle of hope and broken dreams.

I guess that’s why the search for a cure for MECFS through the global COVID response feels especially unrealistic. Call me pessimistic, but suddenly finding a cure for a disease that has seen little progress in the last several decades seems unlikely, no matter how lucky we get. And it seems even more unlikely when you consider that any progress that is made towards a cure for MECFS in the next couple years will likely have to be tied to coronavirus research since that is what the medical and science world is focused on right now.

I’m not saying it’s impossible, I’m just saying that it requires a level of optimism that I’m struggling with at the moment. I guess you could say that I’m hopeful but not getting my hopes up. As I recently wrote on Twitter, maybe the intense focus on the COVID will somehow further the research into other viruses like Epstein Barr and cytomegalovirus, which often leads to cases of MECFS. The more I read about patients with coronavirus, the more I wonder if the mechanisms of MECFS, which we know little about, may end up being similar to those of the COVID. Maybe it will take something as unprecedented as this pandemic to produce an even more unprecedented outcome for MECFS patients and our advocacy coalition. For the sake of everyone with this illness, I hope that the one time I don’t get my hopes up we will finally get the breakthrough we’ve all been waiting for.


1. Thanks for reading!

2. Some GOOD NEWS: My memoir, WHEN FORCE MEETS FATE, is now available for preorder on Amazon (Canada, Australia, etc.), B&N, and Booktopia. If you’ve already ordered it or plan to, the book will be published January 2021 and all copies will be delivered then. We’re currently working on a new cover for the book (that’s why there’s no thumbnail on the listing yet). I will be unveiling the cover before its published and I’m also working on the audiobook, which I’m excited about. I’ll have some big announcements in the weeks and months leading up to the release of the book. So stayed tuned!

4 thoughts on “Advocacy Coalition: A Day Late and a Hundred Million Dollars Short”

  1. In my thirty years with this disease, I have had my hopes dashed many times. I don’t let them/they don’t choose to get all that excited any more.

    I am able to write fiction, haltingly, and not every day, and any energy I have that does not absolutely have to go somewhere else goes into Pride’s Children – and if I had any MORE energy, the excess would go into marketing.

    One has to live somehow. And I’m too tired of the hoopla failing. I’ll be delighted when they have a cure, if I’m still alive. Up until then, I just don’t believe it.

  2. Jackie Naiditch

    As they say, “I hear you.” Coping with ME/CFS is a balancing act. Ideally, you accept the situation as it is, while still maintaining hope that it can change. This is a very, very difficult act of mental and emotional gymnastics. My hope regarding COVID-19 and ME/CFS is that both illnesses may involve inflammation and upregulation of the immune system. So maybe a drug or drug cocktail that suppresses the immune response for COVID-19 can do the same for ME/CFS. But, really, like you, I’m not holding my breath waiting for a cure for ME/CFS. I’ve had this illness for over 20 years and, like you, I’ve seen possible treatments touted and then go down the tubes. So I’m just doing the best I can to get the most out of each day, trite as that may sound. For instance, I’m getting a bird feeder so I can just watch and appreciate the birds in our area.

  3. I think treatments might be a more realistic goal given that most other neuroimmune diseases with a lot more funding have nothing close to a cure. On the other hand there are a tremendous number of researchers working on aspects of this disease with new ones coming on board all the time (just look at some recent posts by Cort Johnson on HealthRising) so you never know when something is going to lead to a treatment that might at least help significantly if not a breakthrough.

  4. I here you. I’m currently deciding if I can or should try to complete some questionnaires for the UK MEcfs Biobank. I do question how many sufferers could complete 3 in one day. Not me. Nor 3 in one week.

    I’m into year 16 now and find awareness days/months etc incredibly stressful. I don’t have the cognitive function for it. I often feel I’m shouting into an ether that isn’t listening.

    So like many others I focus on living as I can & finding some joy in life. But I’m also still considering the questionnaires. There will need to be a compromise on that. But that’s our everyday lives with MEcfs anyway. Biz as usual.

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