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ME/CFS Recovery Rate: Hopeless Optimist vs. Hope & Optimism

We have research going on all around us in hopes of finding a cure for ME/CFS. To me, it seems learning more about Long COVID has caused ME/CFS to be taken more seriously.
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Introduction

We grew up being scared of the big C word because the odds of getting cancer were high. However, it has a survival rate of 67%.[i] Now those aren’t very good odds, but they’re far better than what’s usually not talked about—myalgia encephalomyelitis/chronic fatigue syndrome (ME/CFS). Did you know that the recovery rate for ME/CFS is only 5%!? Why don’t people tell—warn—us about this? Why?

Be Brave Enough to Take One More Try

I know it sometimes hurts when hoping for something to finally work when struggling with health challenges.  But I want to give you hope anyway.  

Hopeless Optimist vs. Hope & Optimism

Not Good Odds

The month of May is drawing to a close and so is the highlighting of ME/CFS online. Will people go on with their lives glad not to be reminded of this illness daily? Meanwhile, 3.3 individuals who currently have this condition will continue to have to deal with it every single day knowing they have a 5% chance of getting better.[ii][iii] Talk about having your hope sucked out of you when you hear a diagnosis with those odds.

That means…an estimated 165,000 get their life back. Are 3,135,000 still suffering because we haven’t figured out what causes it yet? Is it because we need to know the enemy before we can defeat it? Do we dare hope for a cure, or even just hope to know what the problem is so we can try to fix it?

Maybe because it is ME/CFS awareness month—or maybe because Long COVID has many symptoms similar to ME/CFS patients—but it seems to be more in the limelight lately. I wrote an article for LinkedIn to explain in a nutshell how I believe ‘they’ are looking at the source of the problem and they don’t even realize it. If interested, check it out here. To See ME, Look Up from the Microscope.

It stays glitched…

until it’s fixed.

Hopeless Optimist vs. Hope & Optimism

Hopeless Optimist

We have research going on all around us in hopes of finding a cure for ME/CFS. To me, it seems learning more about Long COVID has caused ME/CFS to be taken more seriously. Advances in understanding ME/CFS are increasing ever since Long COVID came onto the scene. Well, I guess you could say that is good and bad. Good because we are learning more, and bad because more are being affected.

‘They’ are looking for biomarkers, deficiencies, and anything else that is different between those with and without ME/CFS. BUT, are these problems there because of the illness or did the illness cause the prevalence of the problems? Are we getting closer to the problem or going in the wrong direction?

Are they looking for a pill to make to solve the symptoms or are they wanting to know how to get us better…even if they can’t come up with a new product to sell? I choose to believe in the good. But, I don’t think they know what they do and don’t know yet.

We know all body systems have the potential of being affected by ME/CFS.[iv] Is it going to take us a long time to figure out what is going on? Or is it just one thing that can affect any system in any way? If so, then this would make the answer so much closer.

Be Brave Enough to Take One More Try

I know it sometimes hurts when hoping for something to finally work when struggling with health challenges.  But I want to give you hope anyway.  

DISH Suggestion

My last blog post was about a list of 12 quotes from Albert Einstein that encouraged me in my personal research. I should have included the one that got me started as well, “Insanity: doing the same thing over and over again and‍ expecting different results.” Is it time to think outside of the box to find answers?

  • Maybe it isn’t about biomarkers.
  • Maybe it isn’t even visible. (This does not mean it doesn’t exist.)
  • Maybe it is about a glitch. A glitch that created wrong programming.
  • Maybe this wrong programming is continuously being recirculated.
  • Maybe the source of the problem cannot be seen.
  • Maybe the answer has been found and it just isn’t common knowledge.
  • Maybe this is the whole purpose of sharing what I believed I have discovered via my website and books I’ve written.
  • Maybe my personal experience and recovery has compelled me to be an advocate for correcting ME/CFS.

Please understand that I know different methods do and don’t work for different people. I get it. What I have discovered isn’t about using A to remove symptom B from your body. I think it is about the predisposition we always here about that is associated with ME/CFS. The predisposition they are looking for in our biomarkers. Will they find it there? I don’t know, but I do know what I did consistently worked for me and I want to share it with you.

Even if it isn’t THE ANSWER, it has enabled me to feel better before I am better and isn’t that what we really want?

When given a diagnosis that seems hopeless, it is very difficult to have hope, especially if you are unable to change anything about it. So, we try to cling to whatever hope we can find.

DISH is a concept and term I came up with. It has two jobs. 1. Shield the body 2. Sort what the Body Encounters When DISH is doing its job, I am winning against my health challenges. When it is NOT doing its job, I am losing. It's that simple. (But it's not that easy. But then again, autoimmune diseases aren't easy either.)

Hope & Optimism

With those grim odds, we feel like we need to accept where we are and create a new identity of ourselves to be able to move forward in life and acceptance. With the current knowledge out there, this makes sense. We develop new normals and all the frustrations that come with them. We won’t admit it, but it isn’t the hope of normalcy that we wanted. It is hope, but deflated hope.

But if nothing changes, nothing changes.

Do we dare hope for a change? Does hoping hurt too much?

When my son was in the Neonatal Intensive Care Unit for the first seven weeks of his life with a heart condition, well-meaning people would say, “Just be positive. It will work out okay.”  They didn’t know the details. How could they say that? How could that be reassuring to us when they didn’t know the facts?

I don’t want to give you false hope. I don’t know your personal situation. I don’t know what method would work best for you to control your symptoms. But I do now know of a complimentary body system I believe nobody else is aware of yet. Understanding this system helped me with my symptoms regardless of which method I chose to use. It has worked many times for me.

What if gaining a better understanding of this system would help others too? It has helped my family members and friends. It has even helped a kitten. (Video here of difference of factoring in this complimentary body system to help a kitten to recover.)

I think in order to have hope and optimism, we need to not be afraid to hope. Something I believe is easier said than done. Something I believe sneaks in without us realizing it. Saying we are hoping for change and improvement, but all along know the odds (5%) of it actually happening.

I hope you choose ‘hope and optimism’.

Hopeless Optimist vs. Hope & Optimism

Conclusion

I do believe we are very close to discovering—if not already discovered—the cause of ME/CFS and how to correct it. I hope people will find out and benefit from what I have discovered. May it get us closer to letting approximately 3,135,00 more people get their lives back.

Be Brave Enough to Take One More Try

I know it sometimes hurts when hoping for something to finally work when struggling with health challenges.  But I want to give you hope anyway.  

References

[i] American Society of Clinical Oncology (ASCO). “What is Cancer Survivorship?” Cancer.Net. July 2021. https://www.cancer.net/survivorship/what-cancer-survivorship#:~:text=About%2067%25%20of%20cancer%20survivors%20have%20survived%205,to%20survive%20certain%20types%20of%20cancers%20than%20others.

[ii] Hui, Kayla MPH. “3.3 Million People Are Living With Chronic Fatigue Syndrome, CDC Report Says.” VerywellHealth. Updated on December 14, 2023. https://www.verywellhealth.com/how-common-is-chronic-fatigue-syndrome-cdc-report-8415858#:~:text=A%20new%20CDC%20report%20found%20that%20an%20estimated,people%20living%20in%20rural%20areas%20with%20lower%20incomes.

[iii] A Project of #MEAction. “Prognosis for myalgic encephalomyelitis and chronic fatigue syndrome.” #ME-Pedia. Last edited May 18, 2024. https://me-pedia.org/wiki/Prognosis_for_myalgic_encephalomyelitis_and_chronic_fatigue_syndrome#:~:text=%20According%20to%20the%20most%20recent%20review%2C%20the,fully%20recovering%20%28returning%20to%20pre-morbid%20levels%20of%20functioning%29.

[iv] Komaroff, Anthony L. MD. “Is Chronic Fatigue Syndrome All in Your Brain?” Harvard Health Publishing Harvard Medical School. February 28, 2024. https://www.health.harvard.edu/blog/is-chronic-fatigue-syndrome-all-in-your-brain-202402283020

Cyndi Whatif
Cyndi Whatif

I am a patient turned author and guide. I share my hypothesis of an overlooked complementary body system which I believe determines whether or not a person has the opportunity to be well.

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