A new device could offer an effective way of diagnosing myalgic encephalomyelitis, also known as chronic fatigue syndrome. People with the disease experience symptoms such as fatigue, sleep abnormalities, and pain, but it’s been notoriously hard to diagnose.

Stanford’s Ron Davis first got the idea for the device back in 2015 while attending an event at the Institute of Medicine where panelists debated whether the disease was a real condition, he recalled.

But he knew it was real. His son, then in his late 20s, had been living with the disease for almost two years. It’s estimated that ME/CFS affects 2.5 million Americans, but the true numbers are unknown, as more than 80% of people who have the disease don’t have a diagnosis for it, according to the advocacy group MEAction. Davis’ own son had gone through a nearly five-year struggle to get his own diagnosis of the illness.

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“It has been viewed as a psychosomatic disease,” said Davis, a biochemist and geneticist. “When doctors make their usual measurements, these patients come out to be normal. But, they’re not measuring enough things.”

Now, Davis and other scientists at Stanford and the University of California, Irvine, have created a device that could make diagnosing ME/CFS much simpler. The research was published Monday in Proceedings of the National Academy of Sciences. Known as a “nanoneedle,” the new device picks up on certain changes in electrical signals to identify people with ME/CFS.

“It’s an important finding because it demonstrates a biological difference between people with ME/CFS and healthy individuals,” said Maureen Hanson, a molecular biologist at Cornell University who was not involved in the research. “There are still people who still don’t believe the disease is a real biological illness rather than a mental problem.”

The small device that Davis and his colleagues created was originally developed to detect changes in electrical signals when cancer cells were exposed to different treatments. They then decided to try it with samples from ME/CFS patients. Previous research from others had suggested that the disease causes cells to use up energy more quickly and have a more difficult time recovering from illness and other stressors.

And so the researchers decided to mimic this by stressing cells from 20 healthy controls and 20 ME/CFS patients by exposing them to increased levels of salt.

“We’re forcing them to consume [energy] and they’re not happy in this new environment,” said Rahim Esfandyarpour, a bioengineer at the University of California, Irvine, and the study’s lead author. “When they face this new environment, their reaction is different than the reaction of healthy cells.”

The cells from those with ME/CFS showed a clear spike in electrical signals, indicating a heightened stress response. In contrast, the samples from the control group were fairly level. Davis said he was surprised that there was such a delineation between the two groups.

“It was a very, very clear signal. The healthy cells had no signal whatsoever,” Davis said.

Previous attempts at distinguishing ME/CFS samples had almost always resulted in some kind of overlap with healthy controls, Hanson said. In her own work studying the gut microbiome, she was able to show that the microbiota in those with ME/CFS was different, on average, but there were still some commonalities with healthy people. And although the current study was only in a small population, “it’s still impressive that there’s this complete discrimination,” Hanson said.

Researchers don’t yet know what’s behind the discrepancy in the two groups. What’s also unclear is whether the difference is unique to ME/CFS or whether other autoimmune diseases would also cause similar spikes in electrical signals.

“I think the next thing they need to do is test a lot more patients and compare a lot of other diseases — like MS — to make sure what they’re seeing is truly because of ME/CFS,” said Brian Vastag, a former journalist for the Washington Post who has been outspoken about his experience living with ME/CFS.

Davis and Esfandyarpour already have plans to do just that and also intend to use the device to test potential new drugs for the disease, which currently has no treatments approved by the Food and Drug Administration. “A diagnostic test is probably the biggest thing that could happen for patients right now,” Vastag said. “Treatment would be huge, but most patients still wait years to get a diagnosis.”

For patients like Vastag and family members like Davis and Hanson — whose adult son also has ME/CFS — even the possibility of a diagnostic is promising. Although it can’t help Davis’ son, who is now bedridden, unable to speak, and relies on a feeding tube due to his ME/CFS, the new device “offers a tiny little point of hope as opposed to none, which has been the case for the past 30 years,” he said.

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  • Hi, please forward this to the father of the son who is bedridden and only able to eat/drink out of a tube, because this could offer him hope of a much more normal life.

    I was almost bedridden for 2 years with CFS. I trusted the doctors but they didn’t help, so I then did my own research to try and find ways of getting more energy so I could live a normal life again.

    When you have CFS “every” little bit of extra energy you can win back makes a big difference to living!

    First I started with removing Dairy and Gluten from my diet. Then I took BioKult 14 strains of probiotics. Then I started taking magnesium, calcium and vitamin D supplements. The magnesium helped with the ectopic heartbeats I was having, and this in turn helped me get a little extra sleep and have a little more energy.

    Next I stumbled upon a homeopathic cure for Candida called Caprylic Acid. This was the turning point in my “recovery”. For the anti-Candida diet, and I’m not saying I had Candida, I just tried the anti candida diet, I had to remove all sugar from my diet and begin taking caprylic acid supplements in the form of magnesium caprylate and calcium caprylate. The first 2 days of the diet my body was really really lethargic, worse than normal and the skin on my wrists and ankles broke out in open sores. I think this is because I began on too high a dose of caprylic acid at 500mg per day. But after day 2 was over my body began feeling like it had more energy than usual. So with this increased energy I climbed up onto my exercise bike and cycled slowly for 5 minutes on the easiest setting until I became exhausted. The next day I was able to cycle for 5 minutes but quicker than the day before. The next day I was able to cycle for 10 minutes and even had enough energy to lift some 2kg weights for about 8 reps on each arm. The next day I could do 3 sets of 8 reps. The next day I went for a little walk, but my body was so weak that every step felt like it was going to be my last, head spinning, heart pounding in my chest, more of a stagger than a walk but hey I did it. The next day I started eating more calories, boosting my calories from about 2000 per day to 3000 per day. Every day got betetr and better, and within 4 weeks I was walking 10km a day “without feeling fatigued”!
    Once the body starts recovering from whatever is causing it to be weak then it doesn’t take to long for it to get stronger again.

    Now I’m definitely not saying I’m cured because I’m not. I still have daily fatigue, my sleep pattern is still disturbed and every day of life is still a challenge, but when I’m on the caprylic acid I am able to live a life outside of the bedroom, able to go for walks, and even able to hold down a full time job!

    Why the caprylic acid works I’m not sure, but it does appear that caprylic acid interferes with the fatigue causing mechanisms of the Epstein Barr Virus, and it also appears that Caprylic acid reduces the numbers of Streptococcus in the body too, so perhaps that acts in some part to not give me more energy on a daily basis but keep those nasties at bay enough to allow my body to have sufficient energy to live a better life.

    It’s interesting that Avril Lavigne is also touted to have had CFS, and I saw her say in an interview that the only thing which had given her her life back was going on a very long course of antibiotics… Caprylic Acid is known to be a natural antibiotic, so perhaps that’s why it works for me.

    ANyway, please forward this to the father of the son who is bed bound, hopefully it will provide a possible answer that he’s not tried yet 🙂

    Best Regards
    Arron

  • Having suffered from CFS for nearly 11 years, I would like to know if the nanoneedle is availble in Europe?
    Please can you provide the details of the scientists doing this ground breaking work so that I can contact them.

    Thank you in advance

  • Hello,

    Can anyone let me know if the detection service is available? My 18 year old son has been suffering since one year and almost in non-functional state. Can anyone help? Please?

    • If you’re looking for a detection test, a 2-day Cardiopulmonary Exercise Test will work. I just participated in a research study as a patient.

  • Thank you for an article that doesn’t include dismissive remarks from Regious Professor Sir Simon Wessely and friends. Everyone with half a brain understands this is preliminary work that needs replication and further development.

    Instead of raining on our parade, how about encouraging NIH and the UK funders to finally step up and show us some money, Sir Simon? And speaking of NIH, about you, Dr Collins? We have a well-defined project that is desperate for funding. Can you not pry loose a few million from the thirty thousand millions you get from Congress every year?

    Actually I already know the answers to these questions. US health authorities made a very loud statement recently when they abruptly cancelled the CFS Advisory Committee.

  • I’ve been a little better in the last couple years but for many years I had to sleep at least 18 hours a day I hope I can take this test

  • Is it possible that this new device could also lead to diagnosis for other “phantom diseases” like Fibromyalgia considering that the disease has been linked to electric signals in nerves?

  • The famous physician S. Weir-Mitchell wrote case reports during the U.S. Civil War that we would instantly recognize as CFS. Weir-Mitchell was an expert in detecting malingering, and he knew every trick soldiers would use to shirk their duty. And yet, he believed what we call CFS was a real disease. He also believed extreme stress was the cause — many of his cases were men who endured forced marches followed by a battle. Weir-Mitchell was among the most eminent physicians of his time. Among many other accomplishments, he was a founder and second president of the American Physiological Society.

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