Update June 2017: ME/CFS and Genetic Study

It’s been a while since my last update.   Time flies, even when you’re not having fun.

When I look back at my over 7 year flox journey so far, I can see that I’ve continued to decline and progressively gotten worse since taking the Cipro.   Any improvements I’ve made, including taking thyroid hormones, were transient, and seemed to either slow down this deteriorating progression, or delay it.   But it hasn’t stopped it.   I have no doubt that without the thyroid hormones, other hormones, supplements, foods, and things I’ve tried, I would not have lasted this long.   All these things have helped me, but they haven’t solved whatever the underlying problem(s) are.   Overall, I feel I’m continuing to decline in a very very very very slow progression.   The thyroid hormones, the supplements, the diets – everything I’ve tried – they’ve bought me time, and they’ve helped me to manage my symptoms and keep going.   But it hasn’t stopped what appears to be the inevitable.

Throughout this website, I’ve explored various causal mechanisms and possible diagnoses I might have in addition to FQAD.    Autoimmune Thyroiditis (Hashi’s) is one known diagnosis.   The other one is now Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

 

A Bit About ME/CFS

There are several excellent patient-driven websites out there to learn about “everything ME/CFS”, so I am not going to go into details about ME/CFS here (see links below).    I’ve spent several years reading these websites, and have found an incredible wealth of information there, from which I feel I’ve learned a tremendous amount.    If there’s one thing I can say about the ME/CFS population, is that they are a pretty savvy crowd in general — when it comes to these “chronic invisible illnesses”, you name it, they’ve tried it or thought of it first.   Sadly, it’s because ME/CFS is another devastating, life altering condition that has been dismissed, denied, and even ridiculed by the medical profession, the research community, and the general public for well over thirty years or more.   Consequently, they’ve been on their own for a very long time as a patient group, and their strength and resilience to keep pushing and searching for answers, all while being so incredibly incapacitated, is nothing less than heroic.

Thankfully, all their hard won efforts appear to be paying off.   Things appear to be changing for the ME/CFS group on all fronts, and I sincerely hope the momentum continues.   ME/CFS research appears to be gearing up and finally getting the attention (and funding) that it deserves.   And, for the reasons I discussed on this webpage, I remain a firm believer that whatever is learned about ME/CFS can only be helpful for all of us suffering from these “chronic invisible illnesses”, including FQT/FQAD.   So I hope all of us who suffer from this constellation of symptoms (see below), regardless of what the original trigger was, will help support the ME/CFS goals and initiatives for all our sakes.

I highly recommend the following websites for “all things ME/CFS related”.   This includes the latest up to date very readable summaries of ME/CFS research progress.

HealthRising:  Finding Answers For ME/CFS and FM 

Phoenix Rising:  Supporting People With Chronic Fatigue Syndrome (ME/CFS)

Open Medicine Foundation:   Fast-tracking revolutionary research for ME/CFS and related chronic complex diseases

 

Brief General Symptoms of ME/CFS

ME/CFS appears to be triggered or caused by many things, such as viral infections, bacterial infections, fungal exposure, trauma or stress, hormonal disruptions, and toxins (which would include FQs).    In my case, I have FQ-Induced ME/CFS.    This diagnosis is in addition to FQT/FQAD and Hashi’s.

Symptoms of ME/CFS include the following, and will look familiar to some of us with FQAD:

  • Unable to exercise without extreme fatigue/weakness afterwards
  • Insomnia, unrefreshing sleep, and other sleep problems
  • Brain fog, concentration and cognitive impairment
  • Pain:   muscle pain, joint pain, headaches
  • Neurological abnormalities
  • Sensitivity to light, sound, odors, chemicals, foods, and medications
  • Abdominal issues: stomach pain, bloating, nausea
  • Sinus/nasal problems; feeling of swollen glands or tender lymph nodes; sore throat
  • Irritability, depression, and mood swings

Additional information on ME/CFS can be found on this easy to read summary page here: http://solvecfs.org/what-is-mecfs/

 

The ME/CFS 23andMe Genes Study:   Do You Qualify?

The Institute for Neuro Immune Medicine at Nova Southeastern University is currently recruiting patients who have been diagnosed with ME/CFS for a very large genetics study using 23andMe data.    Genetic data from DNA Ancestry.com is also acceptable.

Information about this study, along with directions on how to get the “Pre-Screening Questionnaire”, can be found here:   http://www.nova.edu/nim/research/mecfs-genes.html

 

If you are an FQT/FQAD patient who has also been diagnosed with ME/CFS, and you have done 23andMe testing or would be willing to do so, you may be able to contribute and participate in this study.   There is an online “Pre-Screening Questionnaire” available, which takes only minutes to fill out, to help you determine if you qualify for this study.   Interested individuals must email   MECFSGenes@nova.edu    (If this link doesn’t work directly, copy and paste it into your own email program, or access through the ME/CFS Genes Webpage here).

I have enrolled in the study.   It was very easy to do, and I strongly urge all FQT/FQAD patients who are diagnosed with ME/CFS to read the ME/CFS Genes Study webpage, email the study and take the Pre-Screening Questionnaire, and participate in the study if you qualify.   The Pre-Screening Questionnaire took only a few minutes to fill out, so you will know within minutes if you qualify.   This is an unprecedented opportunity not only for the ME/CFS community, but for those within the FQT/FQAD community also diagnosed with ME/CFS as well to participate in the largest genetics study of its kind.

 

I Am An FQT/FQAD Patient With ME/CFS, Why Should I Participate In This ME/CFS Study?

As I wrote on this very long page with the equally long title of Is it Lyme’s Disease, Sjogren’s Syndrome, Mitochondrial Disease, Chronic Fatigue Syndrome, Fibromyalgia, Fluoroquinolone Toxicity Syndrome, or . . . The Commonalities of Post-Viral, Post-Bacterial, and Post Fluoroquinolone Syndromes”, FQ ADR’s appear to cause, trigger, or mimic many other “Chronic Invisible Illness” symptoms, including ME/CFS.    If FQ’s can trigger or cause the same or similar symptoms as these other conditions, then it only makes sense that some of the underlying biochemical, genetic, or epigenetic causal mechanisms may be similar as well, regardless of the initial trigger.   Studying either one of these illnesses – FQT/FQAD or ME/CFS – will most likely help shed light on the other.    I remain a firm believer that whatever is learned about ME/CFS or FQT/FQAD, or many of these other conditions discussed on the above page link, can only be helpful for all of us.

As I wrote on the “Why Test? and “Dear Doctor” Letters” page, the only hope we have of ever possibly finding one or more true “biomarkers ”, or “smoking guns ” for ME/CFS, FQT/FQAD, or any of these other conditions, is by at least looking for them by whatever means possible.   This includes any genetic testing that we can have done.    Although 23andMe provides very limited data (in comparison to sequencing the entire genome), it’s something that patients can purchase on their own without a doctor, and it provides an increasingly larger amount of clinically relevant data of many of the most commonly known and researched genetic variations that may contribute to disease.    Genetic testing with 23andMe or any other medical testing that we as patients can do on our own doesn’t guarantee that we’ll find anything.    But not even looking in the first place guarantees that we won’t.   This is an incredible opportunity for FQ-Induced ME/CFS patients to easily and confidentially participate and contribute to the largest genetic research study of its kind so far.

Please note that this is NOT a study specifically for FQT/FQAD – there are NO questions in the study specific to FQT/FQAD or FQ antibiotics.   This is a large, university based formal research study of ME/CFS possibly linking to genetic data hidden within 23andMe data.   Please respect the fact that this is an ME/CFS based study first and foremost, and not an FQT/FQAD one.   In my opinion, this in no way detracts from the importance and relevance this study has for FQT/FQAD victims, and I hope that all FQT/FQAD victims who have been diagnosed with ME/CFS will participate.

 

Why Should I do 23andMe Testing and Participate in This Study?

Many people, especially those with one or more “chronic invisible mystery illnesses”, do the 23andMe genetic testing for their own purposes.    Many healthy people also do 23andMe or DNA Ancestry testing out of curiosity about themselves and their ancestry.

Funding and interest in researching many of these “chronic invisible mystery illnesses” has historically been somewhere between very low and non-existent.   With the advent of the internet and social media interaction, the world is finding out just how common and significant these debilitating and devastating conditions are, and patients are demanding and driving change.    Millions of people suffer from these conditions and we are at the very start of the “Genomic Revolution”.    Researchers are taking notice.   The race to find genetic biomarkers, causes, and potential treatments for some of these conditions is on.

However, large traditionally based research studies are incredibly expensive, time consuming, and can take years to get off the ground and supply any results.    And funding for studying many of these conditions continues to be far below what it should be, stifling and crippling researchers who have the interest.   When it comes to genetics, using patient-owned 23andMe data can be a faster, less expensive way for researchers who have a keen interest in studying these conditions, but are unable to get the funding and other resources they wish they had from other sources.    Again, although 23andMe genetic data is limited in scope, the information it does provide is clinically relevant and may be useful for researchers despite the limitations.    And using 23andMe patient supplied data allows us patients to participate and contribute to making a difference in this endeavor on our own behalf.

To my knowledge, this is the first large scale, university based research study using patient supplied genetic data to study a specific condition such as ME/CFS.    What makes this study so powerful is the large number of participants they are recruiting:   a minimum of 10,000 people.   This is an incredible opportunity for everyone who suffers from ME/CFS, including those with FQ-Induced ME/CFS, to participate and contribute to this one of a kind study.

 

My 23andMe Genetic Data Is Already Being Used In One Or More Other Research Studies.   Can I Still Participate In This One?

Yes.   If you meet the ME/CFS Genes Study Pre-Screening Questionnaire criteria, you will be able to enroll in this study, regardless of what other studies your data is being used in.

More and more, these types of voluntary patient participation studies using patient purchased genetic data will probably be occurring in the future for the reasons I presented above.   Once you have your own genetic data, you’ll be able to participate in any other future studies you meet the criteria for and might want to participate in.    Participating in one or more studies may not provide the answers we’re looking for right away.   But not participating guarantees that we’re not going to find any answers any time soon, if ever.

The more studies like this that are initiated, the faster we’ll start getting some answers, and the more interest other researchers will take in our plight.   If you have the opportunity, there is no reason to limit yourself to one study, if you qualify for others and want to participate in them.

If you are enrolled in a more comprehensive genetics or other type of study, but you also have 23andMe data and qualify for this study, I would still urge you to enroll in this ME/CFS Genes study.    Sound science and research depends on as much research and as many studies in the field as it will take to eventually converge on and confirm sound answers and solutions for all of us.

It’s a start.   We as patients with these devastating and debilitating illnesses have demanded recognition, change, research, and answers.   Here is our opportunity to continue that trend and participate and contribute much needed data to any qualified researchers interested in our particular diseases and conditions.

This is an unprecedented opportunity for those of us with FQ-Induced ME/CFS to participate and contribute to research.   I hope you take it.

 

Acceptable Genetic Data For This Study

If you have not done 23andMe or DNA Ancestry testing yet, but would consider doing so if you know you can enroll in the ME/CFS study, email the study and take the Pre-Screening Questionnaire.   If you qualify, you can then order the genetic test of your choice, and enroll in the study when you get your results.   Please note that you are responsible for the costs of your own genetic testing; the study will not pay for this.

https://www.23andme.com/     23and Me DNA Genetic Testing and Analysis:   You can order the “Ancestry Service” for $99 or the “Health + Ancestry Service” for $199.    I checked with the ME/CFS study coordinator, and both price points will provide the exact same data needed for their research purposes.   So you can’t go wrong with either.  The main difference is that the higher price point will include additional services through the 23andMe site, such as their online reports on traits and health.

https://www.ancestry.com/dna/ DNA Ancestry.com    The current price for their kit is also $99, and will provide the same raw data that 23andMe does, so it can also be used for this particular study.   The only difference between 23andMe and DNA Ancestry.com, is that Ancestry only analyzes 22 out of your 23 chromosomes.   For some reason they do not analyze the sex chromosome.   My guess is, despite this, researchers will be able to identify gender from other aspects of your DNA.

http://www.nova.edu/nim/research/mecfs-genes.html     Institute for Neuro Immune Medicine at Nova Southeastern University ME/CFS Genes Study Link.    This is the same study link I provided at the start of this writing.   It provides information about the study, including privacy and consent issues, along with the Pre-Screening Questionnaire and clear instructions of how to proceed.

MECFSGenes@nova.edu   Email contact for the study.  (If this link doesn’t work directly, copy and paste it into your own email program, or access through the ME/CFS Genes Webpage here).

 

FQT/FQAD Genes Study?

I think the ME/CFS Genes Study is a model study of what could also be done for the FQT/FQAD population.    Many FQT/FQAD patients have already done their 23andMe genetic analysis, and many of these patients would be eager to contribute and participate in any studies helping to look for a possible genetic biomarker.

If there are any researchers reading this who might be interested in doing a similar study using 23andMe genetic data for the FQT/FQAD population, please contact myquinstory@gmail.com   (If this link doesn’t work directly, copy and paste it into your own email program, or access through the MyQuinStory website here).