Holding On to Hope After a Loss From the ME/CFS Community

Editor’s note: If you experience suicidal thoughts, the following post could be potentially triggering. You can contact the Crisis Text Line by texting “START” to 741-741.

Yesterday I woke to a blue rose. I should have known something was wrong when there was very little activity in my favorite ME/CFS groups on Facebook. Blue rose days are like that. The community retreats in silence and grief on these days. We are afraid to admit what we all know: ME/CFS can and does kill. Or, according to author Julie Rehmeyer, “It is the neglect of ME that kills.”

A blue rose indicates that someone has died in the ME/CFS community. On these days many of us replace our profile pictures on Facebook with a picture of a blue rose in honor of a life lost prematurely, and to raise awareness about the seriousness of this illness. We have lost far too many beautiful and talented souls to this disease – including those who spent what precious energy they had doing advocacy work to raise awareness about the fact that we still do not have FDA-approved tests and treatments.

Despite not knowing the cause of ME/CFS, doctors often say with authority that you cannot die from this disease. How can they be so certain when so little is known?

We live in a time when some people seem to be trying to replace science with other belief systems. The dismissal of climate science by large portions of society is a jarring example, but I believe this mentality pervades medicine as well. Despite there being a rich peer-reviewed literature showing a long list of physiological impairments in ME/CFS, I’ve found that many physicians still elect to believe that the illness is psychiatric in nature, much in the same way some politicians deny climate change is real.

This mentality places us at risk because there are several co-morbidities that could shorten one’s life if not carefully monitored and managed. Cardiac abnormalities and B-cell cancers need to be addressed, but one must also ask: what are the health consequences of chronic, unremitting inflammation over time? Stroke, cardiovascular disease, cancer, dementia, to name a few.

Many of us find solace in the fact that we do not have a terminal diagnosis, yet we long to be acknowledged for the extreme struggling we endure day in and day out. With no cure on the near horizon, we are forced to resign ourselves to the uncertainty of having a poorly-understood chronic illness. Sometimes this burden, especially when combined with a lack of hope, leaves many of us to wonder how long we can carry on. I live in constant fear of losing my severely ill friends to  suicide or organ failure. I myself have entertained ending my own life at the worst of times, though my strong will to survive this will hopefully always win that debate.

Can ME/CFS kill? Most certainly it can. Although data are limited on causes of death in ME/CFS, we know this much: ME/CFS patients are at increased risk of all causes of mortality, especially suicide. Using data from a memorial list kept by the CFIDS Foundation (now Solve ME/CFS Initiative), a study called “Causes of Death Among Patients With Chronic Fatigue Syndrome” asked: of the ME/CFS patients on the list, how did they die and at what age, and do these mortality statistics differ from the general population?

They found that the median age of death from causes such as cardiovascular disease, cancer and suicide were substantially lower in people with ME/CFS when compared to the general population. Simply put, people with ME/CFS die younger than people dying of the same causes in the general population.

While this study does not directly address mortality caused by ME/CFS, it does suggest there is an increased risk of death. It would be unwise to extrapolate too much from this study for a number of reasons, but the results point to several ways we might increase our chances of surviving while waiting for better treatments.

Build a network of online friends

In her film “Unrest,” Jen Brea says, “Illness doesn’t scare me. Death doesn’t scare me. What terrifies me is that you can disappear because someone tells the wrong story about you. I know that no one is coming to find me because no one even realizes I’ve disappeared.”

Isolation, especially among people with severe ME/CFS, is one of the greatest challenges when enduring life with ME/CFS. Over time, the losses snowball – relationships, friends, family, jobs, homes – leaving people with little support or assistance. Combine this with the mistreatment by doctors and the situation can become very bleak. Life with ME/CFS is hard enough without these added burdens.

Facebook groups and ME/CFS forums, like Health Rising, Phoenix Rising and Science for ME, are great places to cultivate friendships with other people who have ME/CFS. Online friendships can take on more meaning when isolated as we tend to invest more in these relationships than a well person might otherwise do. Having an online community helps to build resilience and these friends are more likely to notice when times are particularly tough and reach out. Find your tribe and invest in it.

Develop a relationship with a therapist during non-crisis times

Cultivating a relationship with a therapist during non-crisis times can help during periods when depression, sorrow, shame, guilt and other difficult emotions become too much to bear. We often lose sight of the fact that things do and will get better, at least emotionally.

People with ME/CFS might avoid seeing a therapist because it could be seen as giving weight to the misguided notion that the illness is primarily psychiatric. Clearly this is not the case, but we should not eschew all help from the fields of therapy, psychology and psychiatry. Studies have shown that people with ME/CFS struggle no more with depression and anxiety than people experiencing other major illnesses, such as multiple sclerosis, despite having one of the lowest quality of life scores. People with chronic illness need support, but this need not imply mental illness.

Therapists are sometimes hard to find, difficult to get to or are too expensive for those with a chronic illness. Having a network of friends to call upon during dark times can be a lifesaver. Likewise, I have my favorite books that help to remind me of what is important in life. Brain retraining programs can help shift the narrative away from loss to one of possibility. There are many ways to build resiliency even when therapists are in short supply.

Seek regular cardiology screenings

Seeing a cardiologist on a fairly regular basis might also be a good idea. We should be screened for murmurs, mitral valve problems, aortic aneurisms and other structural abnormalities commonly found in people with ME/CFS. This is especially true for people who also have Ehlers-Danlos syndrome (which often co-occurs with ME/CFS). Such structural problems may be fatal with certain arrhythmias. Cardiac problems may also arise due to autonomic disorders, which can give rise to POTS or neutrally-mediated hypotension, among other rarer conditions. Also, reduced blood volume and lower cardiac output leads to an inefficient heart and exacerbates POTS and hypotension in ME/CFS patients. These conditions place a further burden on our health, but often they can be managed to increase quality of life.

Pursue routine cancer screenings

Especially as we age, cancer screenings should be pursued with diligence. Pap smears are all too easy to ignore when dealing with far more urgent medical needs most of the time. Colonoscopies present a special challenge as the preparation and sedatives can take their toll on our sick bodies, but are highly effective at detecting colon cancer before it is a problem. Inquiring about B-cell cancers and symptoms could also help with early detection.

When we reach out for medical help, it is all too common for doctors to tell us or imply that if we just tried a little harder to think positively, exercise more and do cognitive behavioral therapy this disease would go away. We know this is not the case. We need doctors who believe us when we come in with a health concern, and who give us the help we need in a timely way without trivializing our concerns.

Hold on to hope

The despair found in the ME/CFS community can be overwhelming at times, leading many to lose hope. Although there are currently no FDA-approved treatments, medical research has accelerated over the past three years since the publication of the 2015 IOM report, leading to many fundamental discoveries about this illness. Recent increases in funding from the National Institutes of Health (NIH) will help solidify and expand on basic knowledge about the disease, a critical step in identifying effective treatments. Likewise, the tide is turning at major health agencies like the Center for Disease Control and Prevention (CDC) in the United States and the National Health Service (NHS) in the United Kingdom, even though it could take time for new information to make its way to physicians.

Let us not let the narrative of the past 30 years shape the story of how we move forward. We have some of the greatest medical minds working on this disease and we are on the verge of great discoveries. Don’t lose hope.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or text “START” to 741-741.