New ME/CFS Research Finding: Protein Disrupts Cells' Energy in Mitochondria

In a series of surprising twists worthy of a thriller and a bit of serendipity, researchers from the NIH's Heart, Lung, and Blood Institute (NHLBI) were studying genetic mutations in a family with cancer and ended up making an important discovery in ME/CFS research. It's a fascinating story, with excellent repercussions for ME/CFS patients, possibly leading to clinical trials in the near future!

One member of the family being studied, a 38-year-old woman, had a genetic mutation associated with the cancer that ran in her family. However, this woman (and none of her family members) had experienced worsening fatigue since she got mono (aka glandular fever) at the age of 16, including an inability to exercise. Sound familiar? As often happens, she'd never been diagnosed with ME/CFS, but clearly, she had all the hallmarks of our disease.

Rough outline of what these researchers discovered:

• Looking for genetic mutations responsible for cancer, they found a mutation in gene TP53. It was causing very high levels of a protein called WASF3 in the woman's samples but not in her siblings.
• The researchers did a literature search of WASF3, and guess what popped up? A little-known ME/CFS study, part of an effort by top ME/CFS researcher Suzanne Vernon, from 2011. She and her team had identified 227 patients with ME/CFS who were thoroughly examined and tested by top ME/CFS experts, creating an enormous set of data (which makes me wonder why the NIH ignored this fabulous set of samples and data when they recently published their "breakthrough" study of a measly 17 patients). The team published a paper that identified eleven different genes that were different in ME/CFS patients versus controls and specifically mentioned WASF3 as possibly being involved in the mechanism of fatigue and exercise intolerance.
• Finding that obscure paper, the NHLBI researchers kept digging and assessed other markers in the woman they were studying, compared to that 2011 ME/CFS paper.
• They also kept digging into the role of WASF3 and the effects when levels are high, as they were in both this woman and the ME/CFS patients studied.
• The researchers found that her muscle tissues had a lower oxygen consumption rate and reduced energy production.
• Next, they used RNA to reduce WASF3 levels in both her cells and healthy controls, and they saw mitochondrial (the energy engines in our cells) function improve across the board.
• Then the researchers produced mice with high WASF3 levels, and guess what? Their exercise capacity and ability to recover was significantly decreased (again, sound familiar?).
• They discovered that high WASF3 levels also causes high Endoplasmic Reticulum (ER) Stress Response. I know that's a mouthful, so let's just call it ER stress, as they do. This is important because high ER stress also occurs in other diseases.

The bottom line:  

These researchers studying cancer have found a new mitochrondrial abnormality that helps to explain not only fatigue in ME/CFS but also our characteristic exercise intolerance/post-exertional malaise. Even better: ER stress is a factor in other diseases, so there are already studies to look at supplements and medications to reduce it. This research team now wants to follow-up with possible clinical trials to try some of these treatments for ME/CFS specifically. And, of course, there's the fact that a whole new team of researchers are now fascinated by the complexities of ME/CFS and motivated to keep digging.

Here is the paper published last year by this team on WASF3 and ME/CFS. And, again, the 2011 paper on 11 genetic abnormalities in ME/CFS that helped them to connect the dots. 

To understand all of this, I read an excellent, easy-to-understand article in Science about the new study. And, as always, I relied heavily on Cort Johnson of Health Rising who worked his usual magic to make this complex series of events and scientific studies understandable. You can read Cort's article here (his sidebar, The Gist, is always helpful for a summary).

Exciting news! 

The fact that the research team is already planning clinical studies gives me hope.

What are your thoughts on these new study findings?

Please leave a comment below.

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Summaries of 2023 ME/CFS & Long-COVID Research and More

It's somehow the end of January already, and I'm way behind on my planned 2023 wrap-ups, so I wanted to get this one up before any more time passes. There are two excellent summaries, looking back at 2023 for ME/CFS and Long-COVID patients, that I want to share with you.

2023: Looking Back on Back on a Year of ME/CFS Research

This post, written by the blog ME/CFS Skeptic: a Critical View into ME/CFS Research, provides an easy-to-understand, patient-centered summary of about 15 different ME/CFS and long-COVID research studies that the authors deemed "most interesting." They've already done the work of explaining each study in simple terms, so you can just scroll through their summary. Some interesting things I noted while reading it:

• Some aspects of ME/CFS that have long been accepted--like low NK cell function--were not confirmed by the studies cited here. I suspect that is mostly due to differences between patients, how we are all so different, as well as some studies focusing on small groups and differences between short-timers and those who've been ill for much longer.
• Virus studies failed to find any specific viruses causing ME/CFS and concluded that we likely have dysfunctional immune responses ... which we already know! But it's good that researchers are beginning to zero in on that.
• New population studies seemed interesting at first but were definitely flawed. One relied on asking people if they'd been diagnosed with ME/CFS by a medical professional--we all know how rarely that happens! Some were surprised the number seemed so much higher than before COVID, but I suspect it is actually much higher.
• Good news that researchers continue to dig into genetics and the gut. Now, I'd like to see more research focused on immune dysfunction!

Looking Back at 2023 in ME/CFS, Long-COVID, and FM - the Most, Best, Cleverest, and Strangest

As usual, Cort Johnson of the Health Rising website (highly recommended!) has pulled together a lot of complex information into a very easy-to-read, even entertaining format, with all kinds of creative "best of" and "worst of" categories. While some reference the same studies as the above summary, there is a lot here that is new. Some highlights:

• Encouraging findings in the field of mitochondrial dysfunction.
• Lots of interesting findings in the growing field of long-COVID research, including high serotonin levels.
• Call-backs to research from decades ago that noted that clotting could be a factor in the blood of ME/CFS patients (I remember these studies and took them to my doctor), now in the forefront again, thanks to the study of micro-clotting in long-COVID.
• New funding for "long Lyme" (previously called chronic Lyme), which is long overdue.
• New "long cold" research on another coronavirus that causes colds and can lead to ME/CFS. The more researchers expand this concept of "long" infections (i.e. post-infection ME/CFS), the more it will help all of us.
• Plus, a new study on lasting illness after the COVID vaccines. I experienced this, as did many others, and patients have long reported that vaccines can trigger ME/CFS--another step forward in awareness among the medical profession!
• New clinical trials for treatments.
• The Mayo Clinic's massive turn-around from the worst place to go for ME/CFS in the US to actually listening to patient advocates and updating their protocols.
• There's a whole lot more here to peruse, all written in short, snappy (even fun) blurbs - scroll through.

 OK, time for some dinner! I hope you find all of that as interesting as I did.

As for me, my months-long severe relapse that ended 2023 has mostly stayed in 2023. I'm pleased to report that I am doing much, much better, mostly due to a new diet that finally got my yeast overgrowth under control and all the work my doctor and I did last year to normalize my thyroid function. The first few weeks of the new year, I felt better than I have in years! I'll write about it here as soon as I can. In the meantime, this Chronic Illness Vlog 1/8/24: I'm Back, Baby! The Diet That's Helping explains some of it, and I'll be posting a new video all about the diet I'm trying next week.

I hope you find all this research news as encouraging as I do!

New Research & Resources on ME/CFS and Long-COVID

I currently have 18 tabs open on my laptop browser, and most of them are new research on ME/CFS, long-COVID, Lyme disease, and related topics that I wanted to save to tell you about! So, I think it's time to pull some of this information together for you and clean up my browser a bit. 

And that's the really good news: there is so much exciting research going on right now, being reported each week! It's hard to keep up with it all, so let me help you with some quick recaps, with links to more information:

Helpful Resources for Patients (and Doctors, too):

Last week, I wrote a whole post about Resources for Educating Doctors about ME/CFS and Long-COVID, so be sure to take a look at that, too. Here are a few additional resources that I've found helpful as a patient:

• Heart Rate Variability from the Bateman Horne Center (led by Dr. Lucinda Bateman, one of the top ME/CFS specialists in the world) - this simple one-page information sheet explains what Heart Rate Variability (HRV) is and how it can help you track how well (or poorly) your autonomic nervous system is functioning. This is another easy way track how you are doing, with hard data, in addition to heart rate and steps taken (see my video and blog posts on Measuring Limits with Heart Rate Monitor and Step Counter). I'd heard that HRV was important but didn't understand it - now I do! I have set up my Apple Watch to track HRV daily, as well as heart rate and steps taken - just another tool to measure when I need to rest and when I am doing OK. Share this with your medical professionals, too!
• Physiology of Post-Exertional Symptom Exacerbation - this video from Dr. Todd Davenport explains the latest scientific findings about why exertion makes us worse and what is going on in the body of someone with ME/CFS or long-COVID when we are active that causes the characteristic crash. Dr. Davenport is one of the top experts in this field, and I had the pleasure of "meeting" him when we were both participants in a set of informative videos about using heart rate monitors in ME/CFS (Part 1 and Part 2), intended for both patients and physical therapists/physios.
  

 

New Research Advances and Updates

• "Blood Tests for Chronic Fatigue Syndrome," an article in Drug Discovery News. This article, which is written in clear layperson language, describes the need for biomarkers and diagnostic testing for ME/CFS, and three of the best possibilities from recent research. You can't go into your local lab to get any of these tests yet, but the progress and the focus of these researchers is encouraging. This is also a great article to share with any doubting doctor (along with the Resources for Education Doctors about ME/CFS and Long-COVID).
• "Circulating MiRNAs Expression in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome" - directly related to the article above, microRNAs are one possibility for future biomarkers/tests to diagnose ME/CFS. In this case, the focus was on how miRNA gene expression specifically for activated HHV-6 infections (common in ME/CFS) could differentiate ME/CFS patients and healthy controls. This short abstract describes the findings.
• "Nicotine applied by transdermal patch induced HSV-1 activation and occular shedding in latently infected rabbits" - I wouldn't normally call attention to an animal study but this one was disturbing, eye-opening, and definitely relevant to ME/CFS patients. We are known to have reactivated herpes-family viruses in our bloodstreams; the specific kind of immune dysfunction of ME/CFS and long-COVID causes these old (latent) viruses to reactivate. There has been talk among long-COVID patients on Twitter of using nicotine as a treatment. Given this evidence that it could cause further activation of herpes-family viruses, I would pass on that one (not to mention how addictive it is).
  
• "Convergence: How Gut, Immune, and Metabolic Issues May Be Producing PEM in ME/CFS" - this excellent article, written for patients, is by Cort Johnson, a patient himself and long-time expert in summarizing research for the patient community. It's his layperson summary of a recent research study, "Suppressed immune and metabolic responses to intestinal damage-associated microbial translocation in myalgic encephalomyelitis/chronic fatigue syndrome" (see why we need to Cort to translate this for us?). As Cort explains, the ground-breaking aspect of this study was how it brought together immune dysfunction, gut issues, and metabolic dysfunction and connected them all to the hallmark exercise intolerance of ME/CFS (and long-COVID, too). See the right-hand column for a shorter, simpler summary under "The Gist." This is exciting research! I plan to share this with our functional medicine specialist.
• "The Paxlovid Possibility: Antiviral Drug Found Protective Against Long-COVID" - another excellent article from Cort Johnson summarizes a recent study from the Veteran's Administration--of 9000 patients!--showing that using Paxlovid early on in COVID-19 infection reduced incidence of long-COVID by 25%. Cort explains the study's findings and what it might mean for long-COVID and ME/CFS in the future. Again, the sidebar labelled "The Gist" provides a shorter bullet-point summary.

That is some really exciting research on ME/CFS and long-COVID, covering some of the biggest aspects of the diseases! The future is looking brighter (and my browser is cleaned up, too). I hope these brief summaries helped to update you on what is going on in the world of research!

New ME/CFS Research Funding at Cornell University

Cornell University in Ithaca, NY, has received a new $9.5 million grant from the NIH (National Institutes of Health) for its multidisciplinary center, Center for Ennervating Neuroimmune Disease, which was established in 2107 to study ME/CFS. You can read all the details of how this new grant will be used in this article.

The center is run by Dr. Maureen Hanson, a longtime ME/CFS researcher who has played an important role in studying the mysterious exercise intolerance at the heart of the disease. Well-known ME/CFS clinician Dr. Susan Levine will help the studies by diagnosing patients in her NYC practice who may participate in the studies. 

The grant will be used for three main research studies, all focused on gene expression that can help to characterize the disease and understand it better:

1. Analyze gene expression in muscle biopsies, using new technology, and looking at RNA in the cells.
2. Study RNA released into blood plasma when cells die, both before and after exercise, to study post-exertional malaise and differentiate between people with ME/CFS and healthy controls.
3. Characterize gene expression in monocytes (a type of immune cell) and platelets in ME/CFS and controls to identify differences in the immune and circulatory systems. Previous work in the center identified abnormalities in these two cell types.

These are all excellent areas for further study. The better that scientists can characterize ME/CFS based on gene expression, the better they will understand exactly what is happening in our bodies. This will hopefully lead to specific ways to both diagnose the disease and treat it effectively.

The full summary about the center and its use of the grant money can be read here.

ME/CFS and Long-COVID New Research Summary

It's been a long time since I wrote one of these research updates, but I've got about 20 open tabs in my browser with exciting studies on ME/CFS and long-COVID that I want to share with you! 

The research into myalgic encephalomyelitis and chronic fatigue syndrome has been encouraging for many years, as scientists figure out more and more pieces of the puzzle. However, the high incidence of long-COVID and its connection to ME/CFS has resulted in an enormous increase in both research interest and funding. Expect to see a whole lot more coming soon!

In the meantime, here are some quick overviews (with links to more details) of research into ME/CFS and long-COVID that I found interesting and encouraging:

 

Orthostatic Intolerance:

This article, Why the 10-Minute NASA Lean Test?, by Dr. Lucinda Bateman, one of the top ME/CFS clinicians in the world, describes a series of studies her clinic has done in the past few years on Orthostatic Intolerance (OI) in ME/CFS patients. Her summary (at the link) is easy to understand and fascinating. As previous studies had indicated, ME/CFS and long-COVID patients who definitely had OI did not always meet the official criteria during the standing/lean test. Her team pointed out, though, that even ignoring the numbers, it was clear these patients did have OI from their symptoms and reactions during the test. They also discovered a new measure (the ratio of pulse pressure to systolic blood pressure) that was more accurate in identifying OI in the ME/CFS and long-COVID patients.The differences between newer patients and those of us who've had it longer are interesting, too.

When I researched OI for the two articles I wrote for the ProHealth website on the topic, I came across a study showing that the standing test is still more accurate than a tilt table test (and far less expensive and easier to get done), but as I explain in the article, you may need do the standing test multiple times to get accurate results and your doctor should always take into account your symptoms while standing and not just the numbers. The original articles have been taken down (along with all articles on specific diseases), but you can read copies I made here: Part 1 - Diagnosing Orthostatic Intolerance in ME/CFS, and Part 2 - Treating Orthostatic Intolerance in ME/CFS. I know the links don't work in these articles, but they both still contain scientific references at the bottom that your doctor can look up for more information, so they're ideal to print and share with your medical team.

 

Identifying Genes in ME/CFS:

1. It has long been known that ME/CFS has both infectious and genetic roots, proven through several studies of families. More than a decade ago, I participated in a study to identify the exact genes involved in ME/CFS, but that study ended when it lost funding. Finally now, many different research organizations are digging back into that problem--with newer technology--and trying to identify the genes that make someone more susceptible to ME/CFS.

In his blog/newsletter, ME/CFS Research Review, Simon McGrath reports, New Study Links 14 Genes to ME/CFS. This study has not yet been published but has been submitted to a scientific journal and is being considered for publication. It used existing genetic data from the UK BioBank and analyzed it in a new way to identify 14 genes that seem to be linked to ME/CFS, paving the way for a possible way to identify patient sub-groups. 

Much of the article at that link is quite technical (far too much in the weeds for me!), but if you scroll down to the bottom, the heading What Do the 14 Genes Do and Can They Explain ME?, it's pretty interesting and easy to understand, highlighting areas of autoimmunity, energy metabolism, sleep, and infection. You might also be interested in the two sub-headings before that: Success with Other Illnesses and Issues with the UK Bio Bank Sample.

 2. Another genetic study of ME/CFS and long-COVID was just published. It is a systemic review of ALL genetic studies published to date on ME/CFS and long-COVID (that includes 23 ME/CFS studies and 71 long-COVID studies, which shows you how long-COVID is affecting the state of research!). You can read a summary (and further down the page, an abstract) of this study in the ME Association's weekly Research Round-Up, October 4-10 (there's also an audio option at the link if you prefer to listen). 

These kinds of review studies can be very helpful in pulling data together. This review found a range of common genes affecting both ME/CFS and long-COVID, including one involved in controlling blood pressure and two involved with immune function. The Research Round-up at that link also includes brief summaries of studies of long-COVID dealing with immune function, potential causes, MCAS, and a potential biomarker.

That's all I have the energy for writing about today--and probably all you have the energy to read, as well! I will try to get back to more frequent updates, both to stay up-to-date and to keep my browser from getting so cluttered!

If you are interested in current research of ME/CFS and long-COVID, I highly recommend checking out the ME Association's weekly Research Round-Up. I linked to the Oct. 4-10 summary up above, and you can see their October 11-17 summary, which includes 7 new studies on ME/CFS and 15 new studies on long-COVID.

I've also been doing some freelance writing, helping Open Medicine Foundation to write patient/layperson summaries of some of their new research projects. Wow, there is some really exciting research coming up! They'll be sharing those in November, and as soon as they're published, I'll share them here with you, too.

New Diagnoses and New Treatments ME/CFS and Lyme

UPDATED: February 24, 2026 

Our son's struggles with ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome) and tick infections (Lyme disease, bartonella, and babesia) got even more difficult this year, but he is beginning to see some improvements now, thanks to a variety of new treatments.

It's been a long, hot summer here with seemingly never-ending crises in our family, but the biggest one has been the decline of our son's health. When he moved back home in May (he's 25), he was in terrible shape - worse than he's been in years - with a bunch of new symptoms and 40 pounds lighter. We knew he hadn't been doing well lately, but we didn't realize just how bad things had gotten. I took him to an Integrative Health practice that we'd heard good things about from local friends in our support group. The practice includes several different medical professionals, though we have been focused on two of them: a Nurse Practitioner (NP) who specializes in tick-borne infections (but looks at the whole body) and a Functional Medicine Practitioner, also a nurse, who specializes in GI issues and genetics. Both have been helpful so far, and with a bunch of new treatments and changes, our son is slowly improving. We hope to get him back to the point where he can live independently and even support himself; it is a slow journey, but we are seeing progress. Here's a summary of what we have learned and what he is trying, in the hopes that some of this will help others as well.

Brief History and Background
It's always hard to give a "brief" history of our son's illnesses because it is complicated, but here goes. He became ill with ME/CFS in 2004, two years after I did (his younger brother had milder ME/CFS that began at the same time but he is now fully recovered). By spring 2006, he was doing quite well, thanks to treatment for Orthostatic Intolerance and was back to school full-time, back in band, and even playing soccer again.

In April 2007, he had sudden onset of joint pain, plus all of his usual ME/CFS symptoms worsened. He tested positive for Lyme disease (a lucky thing, since the tests only catch about 60% of cases) and was treated for it. The joint pain improved, but he never really got back to that good state he was in the previous year. Over the next three years, his condition gradually worsened. Finally, some strange symptoms - and the help of other parents online - clued us into the culprit, and we took him to an LLMD, a Lyme specialist. He confirmed that our son had two other tick infections, bartonella and babesia, in addition to Lyme. Since the three infections had been present for so many years (and gone mostly untreated), they were dug into his system pretty solidly and were difficult to treat. His immune problems due to ME/CFS made treatment even trickier.

Fast-forward ten years. With treatment for the three tick infections, plus more treatments for ME/CFS, he improved to the point where he was able to start college on time, live on campus, and graduate with an engineering degree. The past ten years had its share of ups and downs, but each time he got worse, we got to the bottom of the issues and treated him. This winter, though, he experienced the severe decline that I described. He was living away from home, there was a lot of stress in his personal life, and I had switched him from his usual tick infection treatment protocol (Byron White) to a different one (Zhang), a change I greatly regret now, as his tick infections had gotten worse, with worsening joint pain, fatigue, nausea, and headaches. In addition, he had developed completely new and alarming symptoms, including severe nausea, vomiting, a burning pain in his stomach, and severe anxiety.

The Tests
Our new medical practitioners ordered a slew of tests at his first visit, including:

• Genova Diagnostics GI Effects 3-day stool testing (our medical team now prefers the Gut Zoomer test from Vibrant Wellness for stool testing).
  
• Bartonella testing through Galaxy Diagnostics (well-known as the best bartonella testing lab, though still not 100% accurate)
• Lyme and babesia testing through Igenex (again, known as the best lab for Lyme testing, though no tests can catch 100% of the infections), plus another babesia test through Medical Diagnostic Labs
• Special stained blood film test through Fry Labs
• Tests through regular labs for a wide range of viruses and other infectious agents (including other tick infections)
• Tests through regular labs for Complete Blood Count (CBC), Comprehensive Metabolic Panel (CMP), thyroid function, celiac disease (gluten intolerance), vitamin D, homocysteine, hemoglobin
• A more sensitive follow-up test for celiac when the first one showed some gluten sensitivity.
• We had already done 23andme genetic testing and sent the results through MTHFRsupport analysis - the genetic specialist looked at that, plus sent our data through another analysis tool.
• Saliva testing for cortisol and adrenal function (in progress).
• DNA Connections urine test Lyme panel (recommended but not yet done).

The Diagnoses
Based on all those tests, we went back for a follow-up visit with both practitioners and learned a lot (some we already knew but much of it was new, recent, and surprising):

• Severe overgrowth of bacteria in GI tract - the GI Effects test showed that he had very high levels of more than a dozen different nasty pathogens. The genetic specialist could point to specific pathogens and tell us what symptoms they caused, including the burning pain in his stomach, joint pain, and anxiety.
• Low hydrochloric acid in stomach, which contributes to some of his GI symptoms.
• Slightly low (low-normal) Total T3 (a measure of thyroid function); other thyroid measures normal.
• Celiac disease/gluten intolerance (something we never suspected).
• Low vitamin D3 - astounding since he takes 5000-10000 IU per day, though he wasn't taking all his meds the past few months since he often couldn't hold food or medicines down.
• Viruses: EBV, CMV, HHV-6 - all previously negative and now present.
• West Nile Virus - another big surprise.
• Babesia - negative (confirming our former LLMD's conclusion that he got rid of this one infection).
• Bartonella - 2 strains present.
• Lyme - equivocal results but likely, given his history and symptoms.
• Though babesia is gone, many other unidentified protozoa showed up in the blood smear.
• Lots of biofilms in his blood (sticky clusters of cells - Lyme bacteria is known to convert to biofilms, which is part of what makes it so hard to treat).
• Yeast overgrowth (which we already knew about and have been treating). 
• Genetic results showed he may be an over-methylator.

The Treatments

•  Nrf2 Activator (a Xymogen product) -  to activate the Nrf2 genetic pathway (per his genetic results - this is one of two genes present in those who don't respond fully to treatment for Lyme disease). This pathway regulates the production of important molecules that impart antioxidant activity, such as glutathione and superoxide dismutase (SOD). It also regulates the production of detoxification enzymes.
• Resumed A-Bart and started A-L Complex, herbal formulas for bartonella and Lyme, respectively, that are part of the Byron White protocol. He'd previously responded well to A-Bart. He is VERY sensitive to tiny doses of any tick infection treatments, so he is only taking 1-2 drops of each per week so far and having to build back up very slowly.
• Added CBD Oil, as needed for nausea, vomiting, stomach pain, joint pain, and anxiety - it's been very, very effective for him in controlling these symptoms in the short-term, while we work to eliminate their causes in the longer-term. We are using the Plus CBD Oil brand, which we buy at our local natural foods store and have found to be effective. Sometimes he buys edibles at a local dispensary.
• Cytomel 5 mcg (Rx) - a tiny dose for his slightly low thyroid T3.
• OrthoDigestzyme - 1 pill upon waking, gradually working up to 3 per day, before meals - to treat bacteria in GI tract, stomach pain, nausea, vomiting, and lack of appetite. Saw immediate improvement from the first week. 

• Changed Probiotics - stopped all probiotics he was taking, except saccharomyces boulardii (for yeast) and added UltraFlora Integrity - to treat bacteria in GI tract, stomach pain, nausea, and yeast overgrowth.
• ATP 360 - 1-3 per day for improved mitochondria function and energy production.
• P-5-P 25 mg - an active form of vitamin B6 that I was already taking.
• Mega Mycobalance - 5 capsules 1-3 times a day - for yeast overgrowth 
• Stopped methylcobalamin (B12) injections - continuing hydroxycobalamin (B12) injections (Rx) every other day only (due to genetic results).
• Reduced 5-MTHF (20 mg - we buy both 15 mg (at link) and 5 mg) from every day to 3x/week (due to genetic results).
• Moved Magnesium-l-threonate from afternoon to bedtime (3 pills) to help sleep. 
• Switched from acetyl-l-carnitine to Carnitine Synergy, a product that includes both acetyl-l-carnitine and carnitine.
• Eliminate gluten from diet.
• Rinse with Biocidin after brushing teeth - to help with certain oral bacteria found in his GI testing. 
• Eat 2 Tablespoons of navy beans twice a week to help with Collinsella bacteria.
• Added Boluoke (1 pill twice a day) to help break up biofilms.

  
Results So Far

• Stomach pain, nausea, loss of appetite are all greatly reduced and vomiting is now rare. He can eat again, hold down his food, and is beginning to gain back some weight.
• He's working as a waiter 2-4 nights a week.
• Anxiety is reduced, though still an issue.
• His average daily rating of how he feels (on a scale of 1 to 5, where 1 is good and 5 is incapacitated) has improved from a low of 3.3 to 2.8.
• His % of time crashed (at a 4 or 5) each month has improved from 42% to 19%.
• He's had the energy to enjoy time with friends or his girlfriend several times a week.

So, he is doing better, improving slowly but surely. He is continuing to work on diet and increasing the dose of the new supplements listed above. He has more testing to do (the saliva test and the follow-up GI testing through Ubiome), and follow-up appointments at the end of August. All these new supplements on top of the many pills we already take are a lot to keep track of, but we're helping him to juggle it all.

Now you see why I haven't had as much time for blogging or social media this summer! This crisis was frightening for all of us, and he really hit bottom by May, but we are hopeful that he will continue to improve. His goal is to make use of that engineering degree and get a full-time job so he can support himself.

I recognize that his particular set of problems is both unique and complex, but I thought that elements of what he's been dealing with would be helpful to others. In particular, I highly recommend the GI Effects testing kit from Genova Diagnostics - we learned so much surprising information from that.

UPDATE 4-11-23: Shortly after I wrote this, the Genova test became unavailable. Our medical team now uses the Gut Zoomer test from Vibrant Wellness, which my son recently took again to see how he's doing. I also used the Gut Zoomer test two years ago when I developed chronic diarrhea.

With the help of this test and treatments recommended from our functional medicine specialist, my GI function is now back to normal.

Another finding from this and later tests was that my son is severely gluten intolerant (perhaps even has celiac disease). Eliminating gluten from his diet led to further, giant improvements, not only in his GI symptoms but in energy and overall well-being. He is so much better now that he recently started his first-ever full-time job in his professional field (he is 28 and got ME/CFS at age 10). A large part of his improvement came from finding and treating GI problems, since a large part of the immune system is in the GI tract.

UPDATE 2-24-26: Our son continues to do very well, even though he still has ME/CFS, Lyme, and bartonella. He has lived independently since 2020 with his girlfriend and has supported himself for several years now. He works full-time at a job with requires both physical and mental exertion and even worked 6 days a week for a while. He still sometimes crashes (the 6-day work weeks are rarer now), if he overdoes or if he catches a virus, but he recovers quickly. He took no sick days at all in his first 18 months of working at this job! Some specific updates:

• He still takes A-Bart and A-L Complex from Byron White to treat bartonella and Lyme. He is still ultra-sensitive to treatment and Herxes if he increases it too fast. He's currently at about 10 drops of each, twice a day.
•  He has continued to stick to a fairly strict gluten-free diet and tries to avoid sugar (most of the time!). If he splurges on something with gluten in it, he gets GI symptoms afterward.
• He gradually stopped a lot of his supplements, but he still takes Boluoke and GastrAcid daily. 
• He is back to a healthy weight and has good energy. He enjoys doing things with his friends, family, and girlfriend.
• He still has some mild anxiety, but is doing well in a job where he's interacting with the public every day. 

 

Have you dealt with any similar GI or tick infection problems? 

Or found some effective solutions to some of these problems? 

Please share your experiences in the comments below.

You can also connect with me on Instagram,  Facebook ,and Twitter.  

Throwback Thursday: Improving Methylation

Today's Throwback Thursday is another topic that has been critical in the improvements we've been able to make in our conditions. I covered Treating Orthostatic Intolerance and Treating Immune Dysfunction in earlier Throwback Thursday posts, and this one is right up there in importance when it comes to treating ME/CFS and seeing improvement in your level of functioning and quality of life.

The Methylation Cycle (click to enlarge), from ProHealth website

The methylation cycle is a group of processes that happen in our cells to help with hormone production, detox, neurological processes, and more. Methylation is part of normal healthy functioning in any person and is extremely important for ME/CFS patients because it is usually dysfunctional (like everything else!).  The best way to explain it is simply to point you to my blog post, The Methylation Cycle: Essential to ME/CFS because it's complicated, and I worked hard to explain it simply in that post, including how to treat with supplements to improve methylation, which should result in overall improvement in your condition.

One critical component of treating methylation is supplementing with vitamin B12, an essential nutrient that is difficult to get from food sources and plays a significant role in methylation. I explain it all in this post, Vitamin B12 and ME/CFS, which includes our own experiences with different types of supplements.

Glutathione is another essential component in the methylation process that people with ME/CFS don't make enough of on our own. This post on Increasing Glutathione in ME/CFS and Related Illnesses explains the role of glutathione and how to get more of it, from diet, supplements, and injections.

Dietary changes are often crucial  to improving methylation and can sometimes bring immediate improvement due to food intolerances you didn't even know you had. One study showed that a full 30% of the young patients with ME/CFS studied had a dairy intolerance! This post, Eating Paleo for Immune Disorders: Our Approach explains the dietary approach we use, based on research and advice from our doctors and dietician and how it has helped us, with lots of tips on what to eat so that it doesn't feel too restrictive, including tasty treats!

Treating and improving methylation was one of several critical factors that quickly improved our son's condition and allowed him to start college on time, as I explain in the post on How My Son Went From Couchbound to College.

All of this is absolutely crucial for any ME/CFS patient, but some of it is complicated. If cognitive problems keep you from understanding any of these posts, please pass them along to a friend or family member who can help you - or a doctor or dietician.

One great thing about improving your condition by improving methylation is that you don't necessarily need a doctor (though, of course, it's always best to consult with one, if available). For many people in areas where there are no doctors even willing to listen and learn about ME/CFS, that makes this one area of treatment that you can try on your own.

I'd love to hear about your own experiences! Have you tried any treatments to help improve methylation? What was the outcome?

2016 ME/CFS Research Summary

© Dana Rothstein | Dreamstime Stock Photos

2016 was a rough year in many ways for most people, with everything from natural disasters to increasing violence to vitriolic politic upheavals (not just in the U.S.). And, if you are reading this blog, then you or a loved one has this debilitating disease, so it was probably a rough year for you personally, too.

But 2016 was an EXCELLENT year for ME/CFS research! Lots of exciting new studies were published and major on-going projects announced, much of which made big headlines, even in the mainstream media. We are living in a time of great change and forward movement in the ME/CFS world, with advances being made constantly in diagnosis, treatment, and uncovering the mysteries of this complex disease.

Here are some highlights from 2016, starting with summaries from two major ME/CFS research organizations:

Solve ME/CFS Initiative published its year-end summary last week, including research advances, bringing together researchers from diverse branches of science with ME/CFS patients, building awareness of ME/CFS, and advocacy efforts to improve funding and government recognition. Their recently announced 5 seed projects through the Ramsay Award Program for ME/CFS are especially exciting and are just beginning. Check out their summary, which is in an easy-to read and understand format, for details.

Likewise, Open Medicine Foundation also published their Summary of 2016 Accomplishments, which is similarly impressive. It includes exciting research efforts that are still moving forward, a top-notch team of scientists and experts, advocacy efforts, and more.

Back here on my own blog, I posted a lot of summaries of ME/CFS research studies published and/or in progress in 2016, including:

• First-Ever Teen ME/CFS Population Study published in the UK
• A much-needed and helpful study showed the Difficulty of Diagnosing POTS and the frequent need for multiple tests (most doctors do one and are done). This is one of immediate use that you can print to show your doctor.
• Two very exciting new studies on Gene Expression in ME/CFS Patients and Lyme Patients showed significant genetic differences between patients and healthy controls and identified some of the most important genes involved. This is critically important research that can lead to diagnostic tools, better treatments, and maybe even someday a cure.
• An Australian study Identified BioMarkers That Might Lead to a Diagnostic Test, though more work is needed to bring it to patients.
• My summary on a bunch of studies on Rituximab, a Potentially Promising Treatment for ME/CFS - 2017 should bring some additional reports on this exciting area of investigation.
• A study out of Cornell that showed that Specific Gut Bacteria in ME/CFS Patients Could Provide Future Diagnostic Tools.
• A report from University of California San Diego released the results of a ground-breaking study that Identified a Metabolic Chemical "Signature" Unique to  ME/CFS Patients. Top ME/CFS doctors in the US are already using the results of this study to test treatments with their patients, and OMF is continuing the research into 2017 to further develop these findings.
• New Genetic Research from the US's NIH Applicable to ME/CFS - although this research wasn't done specifically on ME/CFS patients, its findings are clearly applicable to us and will likely result in follow-up studies specific to ME/CFS.

Wow! That's a LOT of exciting research developments in one year, and in all kinds of different areas - genetics, biomarkers, treatments, and diagnosis. Some of these studies are already applicable to patients and many of them will form the basis for further research in this new year and beyond.

The pace of research into ME/CFS is definitely accelerating at a faster and faster rate - and the more that happens, the faster the advances will come because they all build on each other.

Heading into 2017, we have - AT LAST! - a solid framework of scientists, doctors, and experts all focused on unraveling the mysteries of ME/CFS and helping its patients - and most of them are sharing information and working together. Things are looking good for us and just keep getting better and better all the time.

Here's to a healthy and happy new year with many more scientific advances!

New Genetic Research from NIH Applicable to ME/CFS

New genetic research from the National Institutes of Health in the US (NIH) is making big headlines and has direct applicability to ME/CFS patients and could lead to new diagnostic tools and treatments. In their article, the Solve ME/CFS Initiative explains this new research and why it is important to ME/CFS quite thoroughly, but, as usual, I will try to summarize the important points simply here. You can also read the complete scientific article at Nature.

• The research was conducted by the National Institute of Allergies and Infectious Diseases (NIAID) and identified a specific genetic defect that matches up with many symptoms of ME/CFS.
• The gene investigated is the Alpha Tryptase Gene. Some people have multiple copies of this gene, causing a high level of tryptase in their blood.
• High levels of tryptase are often associated with allergic reactions (which, like ME/CFS, are caused by a partly over-active immune system) and interestingly, have been found in patients with POTS (Postural Orthostatic Tachycardia Syndrome). Since studies show that about 67% of ME/CFS patents have POTS (where the heart rate goes sky-high when you are upright) and pretty much all of us have some form of Orthostatic Intolerance, then this is directly applicable to ME/CFS patients. 
• This particular study did not mention ME/CFS directly but described a "syndrome" with symptoms very similar to ME/CFS, including: dizziness and lightheadedness, skin flushing and itching, gastrointestinal complaints, chronic pain, and bone and joint problems (many of these are directly related to POTS).
• In the general population, only about 4-6% of people have high tryptase levels (and some of those have these symptoms), so finding high tryptase levels in any patient group is significant.
• In previous studies, NIAID researchers found that people with symptoms of hives, Irritable Bowel Syndrome, and overly flexible joints have high tryptase levels (again, these are all common symptoms of ME/CFS - about 15% of ME/CFS patients have hypermobile joints).
• This current study includes members of 35 families, including 96 people with these kinds of symptoms and 41 without (sound familiar again?)
• With more research into this gene, scientists can develop diagnostic tools based on the gene, which can lead to potential treatments, such as ways to block alpha tryptase.

So, this is all at an early stage, but this research sounds as though it is directly applicable to ME/CFS, so it will be interesting to see what happens next and if any ME/CFS researchers pick up on this finding to follow-up specifically on our disease.

I was particularly interested in this new study because my dietician/biochemist just requested tryptase tests for my son and I, as part of a panel of tests to look for signs of Mast Cell Activation. Unfortunately, the lab didn't run that test (always a problems when requesting dozens of tests at once!), so I still don't know if ours are high or not. With this new study, I may follow up on that.

So, more good news on the research front! The findings this time are in genetics, but we have had ground-breaking studies on ME/CFS in the past two years on immune dysfunction, GI tract,  metabolics, more on genetics, and more - it's an exciting time!

P.S. As I explained above, all ME/CFS patients have some form of Orthostatic Intolerance (about 67% have POTS and over 97% have NMH). If this is news to you, and you didn't know you have OI, please read the information at these links and talk to your doctor. OI is something easily measured by any doctor in any office and responds well to treatment, often with dramatic improvements in quality of life and symptom relief!

Unique Gene Expressions in ME/CFS and Lyme Disease

Two recent studies have been published using the latest technology to analyze the genetic expressions in ME/CFS patients and those who have had and been treated for Lyme Disease, respectively.

In the ME/CFS gene expression study, they used 88 subjects - 42 with a diagnosis of ME/CFS and 38 healthy controls - to conduct a comprehensive study of the entire known genome to look for differences and distinct markers in the ME/CFS patients. They found 442 SNPs (pieces of known genetic material) associated generally with the ME/CFS patients, 12 of which were significantly in the coding region of the genome, with 2 of these being especially significant. They also identified 5 SNPs specifically related to T-cell receptors (a part of the immune system known to be dysfunctional in ME/CFS).

This is a very significant study, as it is the first one applying the advanced genetic analysis currently available to ME/CFS, but it is not the first genetic study of ME/CFS. Two earlier researchers began this process about 10 years ago. Dr. Kerr of Scotland headed up a genetic ME/CFS study whose preliminary results were published in 2008 of 25 patients and 50 healthy controls. Then, those genes that were different in the ME/CFS patients in the first round were analyzed in another 55 patients and 75 healthy controls (my blood was a part of this study! I worked through Dr. Enlander in NYC to donate my blood and participate in the surveys). Their results showed 88 genes showing different expression in the ME/CFS patients, many of these related to immune function or infections, which suggested 7 sub-types of ME/CFS.

Dr. Gow, also of Scotland, published a follow-up paper in 2009, building on Kerr's earlier work. This was a smaller study - only 8 patients and 7 controls - but went into greater depth. It found 366 genes with different expressions in ME/CFS patients versus healthy controls. Unfortunately, all of that ground-breaking work in Scotland came to a halt when funding dried up...so seeing this new study is a reason for celebration and hope!

However, even before the technology existed to do this kind of genome analysis, researchers knew that ME/CFS had genetic roots, just from observations of how often ME/CFS occurred in family members. Back in 2006, the New Jersey CFS Association did a population study of ME/CFS incidence in families with some startling results, showing both genetic and infectious roots for ME/CFS. In their study of 219 patients and their families, blood-related family members not in the same household as an ME/CFS patient had a 3 times greater chance of getting ME/CFS, those in the same household but not blood-related (like spouses) had an 8 times greater chance of getting ME/CFS, and those both blood-related and in the same household, like children, had a 13 time greater chance of getting ME/CFS than the general population! Wow. Is it any surprise that both of my sons got ME/CFS a couple of years after I did?

Back to the present, another new study was just published analyzing the genes of Lyme disease patients (29 patients and 13 controls) at the time of diagnosis and six months later, after treatment. It showed a different gene expression in patients, both at the time of diagnosis and six months post-treatment, than the healthy controls. Interestingly, it did not show genetic differences between those patients who were fully recovered and those who had persistent symptoms. Those gene expressions specific to the Lyme patients showed some similarities to those of patients with three different chronic immune disorders, suggesting that Lyme causes similar immune dysfunction that stays on, even after the disease is resolved.

Why should we care about these complicated genetic studies that we can barely understand? Because this information on gene expression could form the basis for future biomarkers (providing a test for ME/CFS and more reliable testing for Lyme), modes of treatment, and perhaps even cures through genetic manipulation. The better the medical field understands what is behind our diseases, the better treatment that will be available to patients. These genetic studies help to form the basis for future research and improvements in patient care and are definitely a reason to celebrate!

$500,000 Reserach Grant for ME/CFS Epigenetics Study

Great news for the new year!

The Solve ME/CFS Initiative (formerly the CFIDS Association) has been granted $500,000 to further the study of epigenetics (basically how our genetic profile interacts with our environment and affects us) in ME/CFS. They are partnering with well-respected ME/CFS clinician and researcher Lucinda Bateman and her Fatigue Consultation Clinic and also Patrick McGowan of the University of Toronto to further the epigenetic research they began in 2012.

You can read all about the details in this Solve ME/CFS Initiative blog post.

What a wonderful way to start a new year!

Giant ME/CFS Research Project Launched!

This past month of crashes, infections, traveling, houseguests, and big events has left me seriously behind the times in ME/CFS news. I've glanced at headlines but have otherwise had no time/energy to dig deeper or understand recent events. I'm trying to catch up a bit this week, both for my own benefit and for the blog, so stay tuned.

I like good news best, so I'll start off with some really amazingly good news in the ME/CFS research world:

As reported by Cort Johnson at Health Rising (a fabulous blog/website for ME/CFS that I highly recommend), a high-profile member of the medical research community has announced a new, huge project designed to unravel the mysteries of ME/CFS. Ron Davis, PhD, will be heading up a research consortium to focus on ME/CFS, including both ME/CFS experts and outside experts in certain fields. The "End ME/CFS" project will be created by the Open Medicine Foundation (OMF), and they are planning to secure funding to the tune of $5 million dollars a year. That's about double the National Institute of Health's (NIH) total funding for ME/CFS, just to put things into perspective.

But it's not just the money that is significant in this announcement (though that's certainly important!) - it's also the background, planned strategy, and personal motivation of Dr. Ron Davis who will be heading up the project. He's headed up the Stanford Genome Technology Center for 20 years, has won several prestigious awards, and published over 500 scientific papers. In an Atlantic Monthly article last year, Davis was noted as one of eight inventors that future historians will consider the greatest inventors of our time, based on his work in genetics.

In the case of ME/CFS, though, Davis has additional motivation besides new genetic discoveries: his own son has very severe ME/CFS, so this project is highly personal for him.

You can read more about Davis and the details of this project in the excellent Health Rising article.

To donate to this ground-breaking project with the lofty goal of solving and ending ME/CFS, head over to the OMF donation page. I just made my donation!

I like good news.

eight inventors tomorrow’s historians will consider the greatest inventors today.

Read more: “End ME/CFS” Mega Chronic Fatigue Syndrome Project Begins http://www.cortjohnson.org/blog/2014/10/11/end-mecfs-mega-chronic-fatigue-syndrome-project-begins/

eight inventors tomorrow’s historians will consider the greatest inventors today.

Read more: “End ME/CFS” Mega Chronic Fatigue Syndrome Project Begins http://www.cortjohnson.org/blog/2014/10/11/end-mecfs-mega-chronic-fatigue-syndrome-project-begins/