Letter Bank

[Jackb23]

Hello,

I came down with EBV in 2015 and I haven't been the same since. Of all my symptoms, cognition is by far the most troublesome. I am still relatively mild (8 on a scale of 10) but life is still very hard to say the least. I have tried many drugs, supplements, and have even done a metabolomics test with Metabolon amongst many other things. While there is always research/"mesearch" that I can do to try and get a better idea of what's going on in my body, there are also many other things that I haven't entertained yet. One of these is advocating.

Writing to our state elected officials is one big way that we can try and grow funds, expand research and eventually find treatments. One of the first things that come to mind when I think about writing letters to officials is the movie, The Shawshank Redemption. For those that haven't seen the movie, it is a story about a wrongfully convicted prisoner who will likely be spending his whole life in a cell. The name of this prisoner is Andy, who tirelessly writes to his officials to try and get funds to make a library in the prison. It takes a very long time and what is likely hundreds of letters, but Andy eventually gets the official to donate money and books to the prison. There are a few parallels between this situation and ME/CFS (feeling powerless, etc.), but one problem is that Andy must embark on an endurance race in order to get his Elected Official to cave. The challenge for us is that endurance cannot be done. The good thing for us is that there are thousands and thousands of members on this site and if we all work together we can make a huge difference! Just think about all of the different threads and how much content is on this site.

A well written letter/ message takes time and effort, and I believe that is part of the reason this task can feel so daunting if you think you are doing it all alone. What's more is that it only gets harder and more laborious with each letter that you write, but I do believe it is the small individual efforts that could really change the timeline of research.
I have started this thread so that we can work to make a large bank of letters that can be copied and pasted before being sent to your official. The letters can be thought of almost like cards you'd buy at the store for a special holiday, but with more extensive messages. Feel free to add personal messages if you want, people can always cut it out and it may help them find some ideas. Some other ideas of what might possibly go in these letters are:

-Statistics:
How many people are affected by ME/CFS
How does the funding amount compare to other major diseases
What is the likelihood that someone might come down with ME/CFS

-What the disease looks like

-History of ME/CFS


-Current Research
What are the latest papers finding and how does that legitimize this disease


-What the official can do to help further research


-A positive message and why you are hopeful





I will work on a few letters and post them to this thread in the coming day(s)


If people can also post representatives for their state when they upload a letter, that would be much appreciated and would go a long way for others.

 

[Jackb23]

@mariovitali I imagine that machine learning could also help generate many different letters. I am familiar with some python and Java but it would take me awhile to write the proper lines of code. I will look for public libraries that may already have an algorithm for this type of task. If you are able to help, that would be great

 

[Jackb23]

This is my first of many letters. I live in Columbus, Ohio and my representatives can be reached at:

Joyce Beatty
471 East Broad Street, Suite 1100
Columbus, OH 43215

or

Troy Balderson
https://balderson.house.gov/contact/



Feel free to take from this letter

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Representative Joyce Beatty,


I would like to start off by introducing myself. My name is Jack B. and I am a 23 year old living in Columbus, Ohio. I have lived in Ohio for the vast majority of my 23 years except for when I lived in South Carolina for a year when I was 18, but after I fell very sick I had to return home from school in less than a year year. I came down with a virus which I thought would be rather innocuous at first, but when my symptoms progressively got worse for months and months at a time, I had no choice but to return to Ohio. At first the things I noticed the most were the debilitating cognitive symptoms, fatigue and pain. I had played sports for most of my life, but soon found myself not having the energy to shower, make food or even communicate with my family in Ohio which quickly made them extremely concerned. While almost all of these symptoms still exist in my day to day life, they are no longer the hardest part. For me, the hardest part is the perennial sense that I will continue to be ill for the rest of my life due to the stigma, lack of funding and lack of awareness surrounding ME/CFS.

ME/CFS or Myalgic-Enchephalomyelitis is a chronic disease often initiated by a pathological insult to one’s body. This can include a virus, infection or many other pathogens. Normally after one becomes sick, their body adapts with help from the immune system and they get well again. But for those with ME/CFS even after the initial insult to the body has passed, the body continues to struggle to become healthy. They don’t know exactly what causes ME/CFS just yet, but the latest research has found Altered Energy Metabolism (Naviaux, 2016 & Lipkin, 2018), Neuroinflammation (Nakatomi, 2018 & Younger, 2019), Microbial Alterations (Hornig and Lipkin, 2017 & Hanson 2016) amongst many other things.

ME/CFS can present with many symptoms, but one of the hallmarks is Post-Exertional Malaise or PEM. It occurs when someone with ME/CFS has overexerted themselves, often with very small/ simple tasks. PEM results in extreme fatigue, pain, flu-like symptoms and dizziness. PEM often sticks around anywhere from days to months depending on the person and can make the condition worse in the long run. For such a devastating disease, ME/CFS is by no means rare. The CDC reports that anywhere from 836,000 to 2.5 million Americans suffer from ME/CFS, and this ends up costing the economy $17-24 billion annually. In a 2017 study titled, Differentiating Multiple Sclerosis from Myalgic Encephalomyelitis and Chronic Fatigue Syndrome,the authors found that subjects with ME/CFS scored worse than subjects with Multiple Sclerosis on 38 of the 54 symptoms that were assessed. This included ME/CFS subjects having showing less physical functioning and more pain than those with Multiple Sclerosis. It is estimated that there are around 700,000 people with Multiple Sclerosis in the United States (Neurology.org). That is less than ME/CFS. But despite this, ME/CFS only received 8 million in funding for 2018, compared to 101 million in Multiple Sclerosis.

ME/CFS has historically been shunned by the media-- CNN, The Los Angeles Times, and many more used to allude to it as “yuppie flu”. According to them, 2.5 million people suffered from a chronic case of laziness, so lazy that those suffering and being accused didn’t even care to fight back. But this was and is by no means the truth. A large portion of the 2.5 million affected are confined to their houses and sometimes even beds because they are so ill. Some even depend on feeding tubes and the support of family and friends, but not all have that. This is why we aren’t always seen fighting back in public. And that is what brings me to this letter—Fighting back. So this is my advocacy, fought for key-by-key on my computer, its not much and that is why I would really appreciate your help. I may be physically confined by my disease, but my determination will not be confined by my will.

I appreciate you taking the time to read this, and I will make sure to continue to reach out to you.

Best regards,

Jack B.

 

[AdventurerSarah]

Although it's true that ME/CFS has been neglected by the media, I'd suggest people not include that in letters. It might be more effective to cite the few media reports that are out there, like the NPR interview with Dr. Komaroff or the CNN piece on Whitney Dafoe. From the lawmakers' point of view, NPR and CNN have more credibility than individual constituents. Also, this is our chance to frame the narrative so we shouldn't be giving more attention to false claims like laziness.

 

[Jackb23]

Although it's true that ME/CFS has been neglected by the media, I'd suggest people not include that in letters. It might be more effective to cite the few media reports that are out there, like the NPR interview with Dr. Komaroff or the CNN piece on Whitney Dafoe. From the lawmakers' point of view, NPR and CNN have more credibility than individual constituents. Also, this is our chance to frame the narrative so we shouldn't be giving more attention to false claims like laziness.

I plan on writing about a letter a week so I will definitely put some of this information in the coming letters, I just didn’t want to condense all of my points into one letter. The emphasis isn’t on having the one best letter, but rather a series of letters, all with more and more information, in the hopes of making more of an impression

 

[AdventurerSarah]

The emphasis isn’t on having the one best letter, but rather a series of letters, all with more and more information, in the hopes of making more of an impression

I totally agree! Just meant it as a suggestion for when people write new letters.

 

[Jackb23]

I live in Columbus, Ohio and my representatives can be reached at:

Joyce Beatty
471 East Broad Street, Suite 1100
Columbus, OH 43215

or

Troy Balderson
https://balderson.house.gov/contact/



Feel free to take from this letter

---------------------------------------------------------------------------------------------------------------------




Representative Beatty,


I reached out to you last week covering a serious concern that I have regarding the current state of ME/CFS. I wrote about the meager funding it receives for research and the harsh realities that ensue in those who are afflicted. As you probably know, Columbus now has a population of just under 900,000 (according to the United States Census Bureau). The Bureau also states that the United States has a total population of around 330,000,000. If the prevalence of ME/CFS is around 2.5 million in the United States (CDC estimate), that means that almost 7,000 in Columbus are suffering from ME/CFS. Not only does this have a huge impact on the people that are ill, but in a recent study done by Valdez (2019), it was estimated that the economic burden of ME/CFS is most likely around 17-24 Billion1..

In my last letter, I wrote about the common misperception that ME/CFS receives in the media. This is true, but I also want to expound upon some of the accurate attention that the disease gets. In May this year, CNN wrote a very impactful article about ME/CFS. To quote the first few portions—
“Multiple times a day, every day, Ron Davis sits with his head bowed, waiting outside his son's bedroom for a subtle signal that it's all right to come in.

He opens the door to the space where Whitney has spent most of the last decade.
Whitney lies motionless on a simple bed, his head shaved and his frame emaciated. He's fed by a tube directly into his stomach. His lips haven't uttered a word in five years.

Davis, who is 77, leads a lab that invented much of the technology that powered the Human Genome Project. Now he and his wife spend much of their days caring for their 35-year-old son, who is immobilized by myalgic encephalomyelitis, or chronic fatigue syndrome (ME/CFS).

Over a life spent at the frontiers of science, Davis has collaborated with many accomplished researchers. He's cashing in on those relationships now in building a world-class team he hopes can find the molecular basis for ME/CFS. "I made phone calls, and everybody I called said yes," Davis says.

Among those who picked up the phone were two Nobel Laureates: Paul Berg, who won the chemistry prize in 1980, and Mario R. Capecchi, who won it in the "Physiology or Medicine" category in 2007.

Some of his colleagues had never heard of the disease. He told them it affected 1% of the population, or about one in 300 Americans. He told them the National Institutes of Health at the time was dedicating less than $6 million annually to researching the disorder.

That poses a challenge in tackling an illness that lacks an FDA-approved treatment, doesn't have a known cause or a singular lab test for clinicians to diagnose it. ME/CFS has lagged behind in the bio-medical imagination compared with cousins like multiple sclerosis, which also affects the immune system and the nervous system2.”

When I approach these letters I try not to come across as if I am aspiring to be melodramatic. I have been extremely fortunate in so many aspects of my life. I live in a nice community, I have a strong support circle, I have doctors who work diligently to try and help me, and I have a loving family. I am only 23 but I have been lucky in the sense that I have not had to witness many deaths of loved ones, but sometimes I do feel as if I am witnessing my own. I’m often dizzy and lightheaded. My vision is often blurry, my brain befuddled. My neck and head often burn with sharp pains. I can’t keep up with others my age and for that reason this disease feels extremely ostracizing.

With that said, I hope I can never point to one thing and say, “That is the worst part about this disease. That is what is so hard about living like this at the age of 23.” Or, “That is why life was so hard back then.” But what I hope I will be able to say is, “This is the best part about being 30.. The best part about being 35. The best part about getting a second chance after feeling sidelined for so long.” To be bitter once I come out on the other side of all of this would only prolong the time I have lost. It would only further rob me of what I had taken for granted before I became sick at the age of 18.

Positivity can come with its caveats, however. Sometimes it can imbue a feeling of complacency or disregard. And it is simple, as long as ME/CFS continues to lack funding for both research and treatments nothing should be expected to change for the many suffering. And for that reason, I would like to continue to reach out to you. I am only 1 of the 7,000 suffering from ME/CFS in the Columbus area, but I want make sure that I am doing my part advocating for both myself and those that can’t-- for the Whitneys of the world. So that I can salvage all the time that I can and make sure my thirties are the best time of my life.

Thanks and more to come,

Jack B.

• Valdez AR, Hancock EE, Adebayo S, et al. Estimating Prevalence, Demographics, and Costs of ME/CFS Using Large Scale Medical Claims Data and Machine Learning. Front Pediatr. 2019;6:412. Published 2019 Jan 8. doi:10.3389/fped.2018.00412
• https://www.cnn.com/2019/05/12/health/stanford-geneticist-chronic-fatigue-syndrome-trnd/index.html