Will I get better?
I get this question a lot. Often from the newly diagnosed. I hate answering it. Because the honest answer is essentially no. Unless you are in the extremely lucky 5% of people who recover you will not get better. There is 3 times larger chance your disease will only ever progress degeneratively at 15% and most people will relapse and remit at 80%. If you are moderate-severe or if you were diagnosed later into symptoms your chances of a full recovery are worse.
But...
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I hope by the end of this post you can say to yourself "MECFS is an incurable disease and I am not giving up hope."
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How?
Well, there are a few ways you can get to better health without lying to yourself that MECFS is curable...
Differential Diagnosis
Comorbidity
Lifestyle Adaptation / Remissions
Research and Development
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Differential Diagnosis
MECFS is often diagnosed prematurely by doctors who simply do not have a cause for a patient's fatigue. Check the ICC Diagnostic Criteria* and it may be that you do not meet the diagnostic criteria for MECFS. This means your real diagnosis is chronic fatigue of unknown origin and the real origin is still out there waiting to be discovered. Almost every other cause of fatigue is more treatable than MECFS so keep searching and find a doctor willing to run extensive tests to find the root cause of your problems.
*see separate post "Is my chronic fatigue Myalgic Encephalomyelitis"
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Comorbidities
Okay, but you double-checked the criteria, you get awful PEM, you definitely have MECFS. It's not a misdiagnosis. Now what?
You still aren't necessarily at the end of the road diagnostically. Many people with MECFS have comorbid autoinflammatory, autoimmune, connective tissue, dysautonomia, endocrine, and other common and rare diseases and disorders. As the saying goes with autoimmune diseases "they're like Pokemon, gotta catch 'em all!"
Getting diagnosed with comorbid conditions can sound like just more bad news but many if not all of these conditions will be more treatable than your underlying MECFS. This opens up pathways for improvement, and could potentially greatly decrease the severity of your ME symptoms.
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Lifestyle Adaptations / Remissions
You checked the diagnosis, you treated the comorbidities, you still feel terrible. What now? This is when you will want to start looking at lifestyle adjustments and therapy modalities such as Acceptance Commitment Therapy.*
First off pacing, when you first start pacing everything you do is going to be setting off alarms and putting you into Post Exertional Malaise. You will feel like you are trying everything and making no progress at all. Most likely what will happen over time is you will drop commitments until pacing becomes feasible for you. This tends to mean things like leaving your job, finding new support networks, getting onto benefits, letting go of old hobbies and picking up less energy-intensive ones. It's all things you can never imagine right now, but over time your life will adjust. This brings us to...
Remission. Remission is a bit of a touchy subject. Not everyone gets them and some people only get partial remissions. Regardless, the likelihood of your condition fluctuating is high. When you have made lifestyle modifications to do less already, a small remission can finally feel like a break from the endless torment of this disease. Many people also report going into mild remission and living years symptom-free simply by maintaining their old level of pacing with a now slightly healthier body. While this isn't really a recovery, it does mean a potential future where you are not entirely fatigued and in pain, all the time and that is something to hope for.
*See the previous post on this topic
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Research and Development
Finally, even if you are so severe that you have given up on remission and no amount of lifestyle adaptation can minimize your activity enough to prevent PEM (Over 25% of ME patients fall here, so you are not alone) there is still a glimmer of hope. Due to long covid, more money than ever before is now being poured into research and development of causes, treatments, and cures for Myalgic Encephalomyelitis. Awareness is increasing and while it is terrible that this disease has been neglected for so long, the decades of neglect mean we really don't yet know how hard a disease this is to cure. For all we know, a basic solution has been sitting right under our very noses. If you have to be waiting around with this incurable disease there has probably never been a better time in history to be waiting. Encourage your friends and family to donate to The Open Medicine Foundation and petition your government to invest in long covid and MECFS research. The best bit of this solution is it's not just making hope and change for your life but for all of us.
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So there we go. Hopefully, that answers the question "will I get better?" Without leaving you in despair. The truth, no, you probably won't ever be healthy again. But that doesn't mean you have to give up hope.
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No.
Will it get better?
Hopefully.
This account isn't about toxic positivity. It's about #myalgicencephalomyelitis a severe neuroimmunological condition affecting around 1 in 100 people or over 24 million people worldwide before long covid. We are the millions missing and millions more and frankly the state of MECFS patients, while potentially better than it ever has been is still absolutely abhorrent. This is why I hate this question. This is why I hate always being the bearer of bad news. Bad news that is just statistics. That 95% of us will not get better. At least not without some sort of scientific breakthrough too far ahead to accurately predict.
But I am still here, so are you, so are millions of us. Living with #incurable #chronicillness#chronicpain and #chronicfatigue day after day. I hope this post can help shed some light on how even though #ME is incurable, we can still manage to keep #hope. I hope these points can also illustrate the different ways that different people cope and deal with their chronic illness and even shed some light on how some people go on when others can not.
Finally, for the newly diagnosed, I hope this post can serve as the honest answer a doctor should have given you. I hope it can be the bad news in the best light in a way that we all deserve to have. You are just at the start of a very long journey and processing this is going to take time. The upsides of this post may feel tiny now but they may grow into meaningful parts of your life as you give them time. All I can say is that taking the time to process* is a necessary step and that you should take a step back and allow yourself time to grieve before you fall into despair.
This isn't a positive post. It isn't a negative one. My hope is it is a truthful one.
*maybe check out my post on Acceptance and Commitment Therapy
