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
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.
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.