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Well, after more than a decade of trying to get doctors to tell me what my “unknown pain syndrome” is, I was officially diagnosed with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) last month on a Zoom call. 
#MECFS
https://www.cdc.gov/me-cfs/about/index.html
#MECFShttps://www.cdc.gov/me-cfs/about/index.html
As my friend Sara said, "Seems a bit strange to say "congratulations", but congratulations on getting a diagnosis. It is a major milestone in a really lengthy navigation of the medical system." 
“Major milestone” barely covers what this means and the “lengthy navigation” might better be described as a nightmarish Kafkaesque maze. 
This isn’t good news but it’s a relief to have official confirmation from an expert in this area of medicine that what I’ve suspected was the case since a friend first suggested it to me years ago is in fact what I actually have.
I spent a few weeks trying to decide how much detail I wanted to share about what the past decade+ has been like and I’ve decided to go with more detail rather than less, in case my story is useful for someone else.
After I’m done tweeting you’ll be able to find all of my ME/CFS threads here.
Bookmark if you want updates. I’ll update the thread of threads with future threads. https://twitter.com/keikoinboston/status/1323047424533925890
Bookmark if you want updates. I’ll update the thread of threads with future threads. https://twitter.com/keikoinboston/status/1323047424533925890
Later tonight I’ll be tweeting a how you can help thread which can be found here. https://twitter.com/keikoinboston/status/1323047657422655488
I’ll also be tweeting a separate thread about my decade+ road to diagnosis. https://twitter.com/keikoinboston/status/1323051699637026817
And later on I will tweet a separate thread for Japan followers which can be found here. #MECFS 筋肉痛性脳脊髄炎 / 慢性疲労症候群 https://twitter.com/keikoinboston/status/1323050806871007233
I will likely write some other threads about ME/CFS in the future, but I have no interest in turning this account into all ME/CFS, all the time, so when I start writing more, it will be elsewhere.
If you’d like to be notified, drop me a tweet or DM and I’ll make a note of your username.
In this thread:
- The bad news
- The good news
- Advice for other chronically ill people trying to get diagnosed
- The bad news
- The good news
- Advice for other chronically ill people trying to get diagnosed
The bad news:
- There’s no cure
- There’s no treatment
- Unclear what my prognosis is
- Life expectancy may be shorter
- ME/CFS has a lot of unpleasant co-morbid conditions
- ME/CFS research is -severely- underfunded
- There’s no cure
- There’s no treatment
- Unclear what my prognosis is
- Life expectancy may be shorter
- ME/CFS has a lot of unpleasant co-morbid conditions
- ME/CFS research is -severely- underfunded
No cure and no treatment means that there’s no magic pill or other treatment plan to make us better.Treatment is aimed at symptom management and treating co-morbid conditions.
ME/CFS is so poorly understood that it’s unclear what my prognosis is. 
Some people recover/go into remission.
Some relapse after apparent recovery.
Others get rapidly progressively worse, become bedbound, and require 24/7 care.
(continued ↓)
(continued from above)
Some plateau and remain at varying levels of disability. Condition may fluctuate. (← For now I’m here.)
Some can still work. Others can’t. https://meassociation.org.uk/about-what-is-mecfs/prognosis-and-quality-of-life
Some plateau and remain at varying levels of disability. Condition may fluctuate. (← For now I’m here.)
Some can still work. Others can’t. https://meassociation.org.uk/about-what-is-mecfs/prognosis-and-quality-of-life
Life expectancy is unclear. One 2016 study says I’m at higher risk for:
- heart disease
- cancer
- suicide
"The all-cause mean age of death for this sample was 55.9 years."
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5218818/
But this was a very small study (56 people) and life expectancy in ME/CFS patients needs to be studied further.
At the moment I’m not diagnosed with any co-morbid conditions although I do have a host of other health problems. But that could change now that I have an ME/CFS diagnosis.
There are a few conditions I haven’t been evaluated for and I’m still trying to figure out what I’m going to do next.
The good news:
After years of neglecting ME/CFS, the CDC finally got their shit together in 2017 and started taking it seriously. They did a major update to their website and launched a systematic evidence review.
https://www.cdc.gov/me-cfs/programs/evidence-review.html
After years of neglecting ME/CFS, the CDC finally got their shit together in 2017 and started taking it seriously. They did a major update to their website and launched a systematic evidence review.https://www.cdc.gov/me-cfs/programs/evidence-review.html
The CDC is also running a multi-site (7 sites) clinical assessment of ME/CFS patients.
https://www.cdc.gov/me-cfs/programs/multi-site-clinical-assessment.html
https://www.cdc.gov/me-cfs/programs/multi-site-clinical-assessment.html
COVID-19 has presented an opportunity for ME/CFS researchers to study a population of post-viral patients in real time to see if they develop ME/CFS or a similar condition and what the mechanism behind that is. https://www.medscape.com/viewarticle/936252
Despite the underfunding, there is exciting research being done in ME/CFS. They are trying to find root causes so that a diagnostic test and therapies can be developed. https://www.frontiersin.org/articles/10.3389/fped.2019.00370/full
My new pulmonologist added me to a list of possible candidates for a pending clinical trial that he hopes will start enrolling in a few months. They are still awaiting FDA approval.
I may or may not be accepted into the study but either way I’m very excited to hear that they’re working on this and that all the testing I’ve been through provided enough information for him to think he knows what may be causing my ME/CFS (more in the thread detailing my saga).
I don’t know much about the study and I’m not sure how much I can say about it so that’s all I’ll say for now.
If I get permission to write more about it in the future there will be another thread.
If I get permission to write more about it in the future there will be another thread.
Here’s my advice for anyone experiencing unexplained symptoms who is having difficulty getting a diagnosis. This is just a partial list and I’ll plan to write more about this later.
Do your own research.Don’t rely on your doctors to educate you. While they may know a lot of things, it’s impossible to know everything in medicine and many of them are not good diagnosticians and may have tunnel vision.
You have to become your own medical detective. Ignore anyone telling you to stay off Dr. Google unless you’re someone who has difficulty doing your own research and will think you have everything.
If you can’t do your own research, enlist someone you trust to do research for you and send you things they think might be relevant.
You may have to request referrals to specialists (or self-refer - I’ve done a lot of this) and request specific tests which is only possible if you’ve done your homework.
What I read:
- medical papers when they’re open access. Read abstracts if they’re not.
- patient advocacy websites
- patient forums
- treatment/product reviews
- medical papers when they’re open access. Read abstracts if they’re not.
- patient advocacy websites
- patient forums
- treatment/product reviews
Throw as much money at the problem as you can as early as you can.This may not be an option for everyone and may not work for everyone but this is one of my regrets. I should have thrown more money at the problem years ago so that I could get diagnosed sooner.
Switch doctors if you don’t get along with your doctor. I try to do enough research in advance in hopes that this will not be an issue, but it’s not always avoidable.
Don’t be an asshole about it, but don’t be afraid to switch doctors if there’s a language barrier. I have done this (rarely).
Note that you may be accused of doctor shopping. This is a real phenomenon but it’s your body, your health, your life. You should be able to have a good working relationship with your doctor and that includes good communication.
Get many opinions. If you’re not satisfied with what your doctor is telling you, get a 2nd and a 3rd opinion if you have to. Doctors make mistakes all the time.
Years ago I also got into the habit of asking my other healthcare providers about any of my symptoms to see if they had thoughts. I learned that some of them are really interested in thinking through problems even if it’s outside their area.
I found these conversations helpful even if they didn’t necessarily lead anywhere. They helped me to understand that there was so much information I didn’t have and that I shouldn't give up hope trying to find the right doctor.
Ask your doctors to justify any tests or treatments they are proposing, especially if invasive, expensive, and/or time-consuming. If you’re not satisfied with their answers get another opinion.
Try not to get sidetracked by alternative therapies that sound too good to be true, unless you’ve done extensive research and feel very strongly that it’s worth trying. In many cases the reason they sound too good to be true is because they are.
Track your symptoms, keep records (personal notes, call logs, appointment notes, official medical records), fill out relevant medical questionaries and inventories.
If you’re up to it, keep a daily journal to track your progress. If you can’t manage that, save emails and social media posts you send to friends and family with progress updates.
Do your own experiments. Record your progress (or lack thereof). Although if you’re planning to ingest anything, always check with your doctors and pharmacists.
Whatever your typical morning routine is to make yourself look better is, skip it. I mean, definitely shower and brush/comb your hair (it’s polite) but if you typically wear make up or style your hair, don’t.
Usually this advice is given to patients going to dermatology appointments but I read somewhere that this can cause all doctors to miss signs of your ill health. You don’t want to appear healthier than you are. https://www.allure.com/story/things-you-should-never-do-at-the-derm
I shower the night before because I usually can’t afford the energy on the day of an appointment. But skipping is also an option. If you’re having difficulty showering, your doctor needs to know.
Keep lists of questions you want to ask your doctors. If you have access to your doctors through online patient portals you may want to send them a message but some questions may be better asked at appointments when you can have a dialogue.
NEVER give up unless you want to It is highly likely that doctors and people in your life will tell you that you’re obsessed and should give up. Don't listen to them. (Assuming that your health issues don't involve delusions.)
They may mean well but this is utter nonsense when you’re having terrible symptoms and can’t get a diagnosis.
Without a diagnosis you can’t learn if there are treatment options.
Even if there are no treatment options you can’t access clinical trials or keep an eye on the relevant research.
Even if there are no treatment options you can’t access clinical trials or keep an eye on the relevant research.
While there are some people with extremely rare diseases, in some cases it’s just a matter of finding the right specialist.
If you’re in the US and have exhausted all possibilities, consider applying to the Undiagnosed Diseases Network. This was my next stop. https://undiagnosed.hms.harvard.edu/
This can be really difficult, but try to stay in touch with friends and family who are supportive. You may find that it’s not who you think it will be.
But also keep in mind that if your existing friends/family don’t understand what you’re going through and aren’t interested in educating themselves, you can’t force them to understand.
Reorganize your priorities as soon as you can. As much as you might like to continue your life as you always have, this is your new normal for a while, possibly the rest of your life. The sooner you accept that the easier it will be.
This doesn’t mean that you have to stop fighting for a better quality of life, but pining for the things you can’t do and the missed/lost opportunities will only make you feel worse.
Think about others.While trying to get a diagnosis is extremely time consuming, it’s important to think about people other than yourself. Within your limitations find ways to do things for other people.
For me this has meant:
- doing volunteer work in public or from bed
- staying in touch with friends & family who are having a rough time
- making gifts & cards for friends & family
- doing volunteer work in public or from bed
- staying in touch with friends & family who are having a rough time
- making gifts & cards for friends & family
The saga continues in this thread. https://twitter.com/keikoinboston/status/1323051699637026817
