ME/CFS research matters

There has been some really exciting research into ME/CFS lately, with a particular focus on auto immunity, discovering biomarkers and measuring biological responses in the body. Let’s hope this is an end to the era of the pointless “psychobabble” study of ME/CFS!

Biological response to exercise identified
See caption.
Dr Lynette Hodges. Source.

One of the key symptoms of ME/CFS is a very specific and disproportional negative response to exercise which can persist long after the exertion ends. Dr Lynette Hodges at NZ’s Massey University investigated this reaction by comparing the physiological responses of ME/CFS patients, MS patients and healthy controls to a series of exercise tests.

All participants rode exercise bikes for one session, with their anaerobic threshold calculated. Even though the MS patients were significantly less fit than the ME/CFS patients, they managed to repeat the same results on the second day of testing, while the ME/CFS patients could not. What’s more, they reached their anaerobic threshold faster and at a lower workload than previously, and some did not recover for up to four weeks after the first course of exercise.

Dr Hodges is now completing another trial which further investigates the physiological differences in response to exercise. But for now, it is excellent to have research supporting what ME/CFS patients have known for years – that exercise can have an extreme, damaging effect on the bodies of those with ME/CFS.*

Rituximab trial underway

After promising initial research, a study into the use of chemotherapy drug Rituximab to treat ME/CFS began in 2015 in Norway. This is one of the biggest studies into treatment for ME/CFS that has ever been conducted, recruiting 125 participants with mild, moderate and severe cases. The study will be unblinded in September 2017, with results expected in 2018.

As RituxME is a randomised, double-blind and placebo controlled phase III study, its results will have serious implications for ME/CFS patients. Due to the past work of Fluge and Professor Mella, we already know that at least some ME/CFS patients respond well to Rituximab. It will be interesting to narrow down the specific applications for this treatment.

Meanwhile, Fluge and Mella have found Rituximab to be so promising, they are investigating other chemotherapy drugs for use with ME/CFS patients. CycloME is a phase II, unblinded study into the use of Cyclophosphamide to treat ME/CFS.

Big data collection

Dr Ron Davis of the Stanford Genome Technology Centre and father of long-term ME/CFS sufferer Whitney Dafoe, is developing devices that quickly and easily take key readings from ME/CFS patients.

He and his team are working on a “big picture” approach to ME/CFS research – instead of starting from a specific hypothesis and attempting to prove or disprove it, they are collecting as much data as they can from ME/CFS patients all over the world to analyse and identify anomalies which may be the key to finding a cause and treatment.

The image above shows a prototype wearable sweat sensor that can transmit electronic readings via Bluetooth. Davis has already developed a nanofabricated cube which can measure electrical impedance (the amount of electrical resistance) in cells, using only a single drop of blood. It can be used as a metabolic testing device to compare responses from ME/CFS samples and healthy controls, and as an assay for drug response. As there is no standard testing available for ME/CFS patients, these devices could act as an important diagnostic tool and significantly speed up the research into drug treatment.

Man holds a thin printed circuit.
Ron Davis holds the printed circuit he and his team developed to test for chronic fatigue syndrome. Source.
12th Invest in ME – International ME Conference 2017

It would be remiss of me to mention this fantastic research without noting where much of it was announced. The 12th Invest in ME conference** was held in London at the beginning of June, and featured speakers such as Mady Hornig, Ron Davis, Nancy Klimas, Prof Mella and others. You can read more about the conference by following the #IIMEC12 and #IiME hashtags on Twitter, or accounts such as @StanfordGenome, @OpenMedF and @Invest_In_ME. Their official report can be read on the Invest in ME website.

Above: I feel the same way, Robert.


*I feel like carrying a copy of this study around so whenever someone suggests I should just exercise, I can whip it out, screaming, “NOT TODAY, SATAN.”

**While ~actual science~ was being discussed, PACE researchers who are still promoting their dangerous psychiatric agenda were at a chummy catch-up on the other side of London. SHADE CAST.

Author: Siobhan S

20 something, living in country Australia. Spoonie profile: ME/CFS, dysautonomia, anxiety. All about sewing, knitting and food. Unapologetic feminist and disability advocate.

14 thoughts on “ME/CFS research matters”

  1. The fabricated cube thingy sounds like it works in a similar way to this awesome sensor scanner I trialed for my diabetes. I had a little sensor thing on my arm (it has a teeny tiny needle in it) and then I was able to scan it with my glucometer and see eight hours worth of blood sugars in one go. I hope they are able to get some more technological advances to help ME/CFS research soon. *Fingers crossed for the drug trial recipients as well.* Positive data from those trials would be excellent. Also I put a photo of our ginger cat on instagram for you. 😀

    Liked by 1 person

    1. That scanner sounds so cool. Did the design ever work out? Like, was it fully developed and able to purchase?

      Yay, I’ll hop onto Instagram for some ginger cat goodness.


      1. My manager was trialing one of those blood sugar scanner things. She said they’re free to anyone under 18 (I think??) but they are very expensive to buy – you have to replace the little sensor implant every two weeks and they cost about $100. The upside is they’re much much easier for kids to use than traditional methods, the downside is if they can’t afford it when they hit 18 then they need to learn how to do it the old way. But perhaps it’s better to learn at 18 than at 8!

        My manager isn’t using it any more – she said it was hard to find a site that it worked consistently on that wasn’t getting in the way, and she found it slightly less accurate than pricking her finger, and so she decided it wasn’t worth the expense. But it’s at market now and available for purchase.


        1. That’s fantastic, thanks for letting us know! Even if it doesn’t work for everyone it’s good to know there are options out there, especially if those technologies are able to be developed for use with other conditions/research.


        2. I had the sensors on the backs of my arms, but I had to be careful because I am very allergic to tapes/adhesives. Luckily it didn’t cause any real reaction to me. But yes, they are quite expensive, unless you’re under 21 now (They recently uped the age because it’s almost always still type-1 diabetes at that age.) They wanted me to be a participant in a research trial they are doing, although I’m not entirely sure of the outcome. My diabetes educator is trying to find a pattern to my rather random blood sugars, (which have been all over the place because I’m permanently on steroids since I had a double-lung transplant), although she’s still not sure she found one, but the data for the month I trialled it was rather interesting. I think she’s hoping every so often I’ll be able to get the sensors again through research funding just to keep an eye on things.


      2. Yeah. I was trialling it because the sensors are $90 for two and they only last two weeks per sensor. They are hoping to show that it will improve blood sugars in all kinds of people, such as chefs, lawyers, nurses – people who don’t necessarily have time to actually check their blood sugars 6 times a day. And also in people like me who are already diabetic pre-transplant and now are on medication that makes blood sugars wonky.


  2. Ooh, interesting! I especially noticed the MS patients being able to repeat their exercise load the second day. This MS patient is not. If I wear myself out I need more than a day’s rest. If I’ve been pushing the limit for some time (like I did when we had workers here that changed the windows and siding of the house) it can take months to shake the effect.
    Were there any at this conference that discussed the microbiome and changes in it seen in ME/CFS?


    1. Hmm, interesting. And no good that you took so long to recover from that effort 😦 I wonder if the study chose a particular subset of MS patients? My feeling is that would have had a limited selection of participants from both the ME and MS groups as they had to be well enough to be on an exercise bike in the first place.

      There were definitely presenters talking about the microbiome! The best way to read about it is on their Invest in ME website, as they’ve recently uploaded a summary of all the presenters.

      Liked by 1 person

  3. It’s so hopeful that there are teams out there working on these things. Science can be an awful place – it’s run by humans after all – but also so wonderful. I hope they can work quickly! But even supporting evidence for things that sufferers already know is so valuable.


    1. It is, because it’s validating and sets some facts in stone which confirm the lived experiences of people with chronic illness. I’m also looking forward to the upcoming research which might explain the pathways of these reactions, as that’s one step closer to treatment.


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