July was a big month for scientific research in ME! Many of the most well-known researchers and clinicians had papers this month including Klimas, Lipkin, Hornig, Levin, Peterson, Montoya, Julie Newton, Broderick, and Marshall-Gradisnik. There were studies in epigenetics, NK cell function, the HPA axis, robots for schoolchildren with ME, and a few interesting critiques and editorials. Read on for our research roundup for July 2018!
Insights into myalgic encephalomyelitis/ chronic fatigue syndrome phenotypes through comprehensive metabolomics is a paper with contributions from multiple well-known scientists and clinicians in ME, including Klimas, Lipkin, Hornig, Levin, Peterson, Montoya, and a host of others. Metabolomics is the study of the chemicals produced in metabolic processes. The team found differences between not only patients and controls, but patients with and without IBS as a comorbidity. Unfortunately they did use “Fukuda and/or CCC” to identify patients; and the number of metabolites measured is high in proportion to the number of patients investigated.
Dr Gordon Broderick’s team released High-fidelity discrete modeling of the HPA axis: a study of regulatory plasticity in biology, a study that discussed ME as it relates to HPA axis dysfunction. Broderick’s group builds on their work from A Role for Homeostatic Drive in the Perpetuation of Complex Chronic Illness: Gulf War Illness and Chronic Fatigue Syndrome (2014), where they presented patterns of hormones seen in ME by gender. This new paper discusses a “bi-stable, oscillatory” pattern for chronic, neuroendocrine disease. A stressor can cause a ‘collapse’ into one of several alternate homeostatic patterns, with different metabolic rules. Fair warning: systems biology involves heaps of mathematical terminology: you may need galoshes to wade through.
Identification of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome-associated DNA methylation patterns by Nancy Klimas’s team showed that methylation, a process through which genes are ‘switched on’ or ‘switched off’ by environmental factors, was affected in ME. Generally, genes in patients were less methylated – or hypomethylated – in comparison to those of healthy controls. This isn’t the first time methylation has been examined in ME; methylation-based protocols have been a mainstay of patient self-help for a decade or more.
Reduced glycolytic reserve in isolated natural killer cells from myalgic encephalomyelitis/ chronic fatigue syndrome patients: A preliminary investigation from Marshall-Gradisnik’s team in Australia has found a depleted glycolytic reserve in the natural killer cells of ME patients, meaning that NK cells may respond poorly in cases of energetic demand.
Dr David Systrom, a clinician who studies ME, was interviewed by journalist and longtime advocate Llewellyn King. The video can be found here.
Systrom states that he has found evidence of small-fiber polyneuropathy (SFPN) in 40-50% of ME patients; and that pyridostigmine, a treatment for SFPN, may be an effective treatment for patients.
Børsting and Culén of Norway wrote a paper on the use of technology for young people with ME called Youth with ME/CFS: Untangling Complexities in Technology Design to Support Everyday Living. You may remember these little robots from the #MillionsMissing protests so that severe patients could watch from home. Check out a video of #MillionsMissing Deutschland that shows the robots in action.
In The putative glymphatic signature of chronic fatigue syndrome: A new view on the disease pathogenesis and therapy, the authors argue that glymphatic dysfunction causes toxic build up within the central nervous system, and may be responsible for some cases of ME.
From Lenny Jason’s team comes Latent class analysis of a heterogeneous international sample of patients with myalgic encephalomyelitis/chronic fatigue syndrome, which posits six different subsets of patients by symptom-cluster.
Checking our blind spots: current status of research evidence summaries in ME/CFS is an editorial written by some familiar members of the Workwell team. At its heart, it’s a refutation of the Cochrane review and a reassertion of dangers of GET.
From Frank Twisk and Lou Corsius comes Cognitive–behavioural therapy for chronic fatigue syndrome: neither efficacious nor safe. They critique a study by Janse et al. in which online CBT is offered to people with ME and found to be effective. Once again, we have a group of researchers who’ve dealt with the inability to find objective measures by not measuring them (despite having done so previously and having found no change), along with a host of other methodological issues.
Manuel Ruiz, a student with ME, wrote an extensive paper on the connection between ME and Epstein-Barr virus, a herpesvirus known to be associated with onset, that can be found in this thread.
And that’s our research roundup for July 2018. Keep reading and keep researching, everyone!
8 thoughts on “July 2018 — Research Roundup”
Thanks
Please sign me up.
Test these patients for ALPHA GAL MEAT ALLERGY it is in also by products made from Meats ex: medicine, vitamins, minerals, food additives, soaps, dish soaps, house cleaners, aerosols, colognes, sprays, wax candles, Water Jugs, cross-overs, shampoo, toothpaste, hair gel, teeth whiteners, shaving
cream, numerous Hospital procedures, hand creams, ice cream, dairy, all meats, pigs etc the list of ingredients is long…Chicken fish turkey duck etc safe providing they have no mammal ingredients at all added, watch for words flavors also any GELATIN made from animal & magnesium stearate…Foods
with spices can be animal so could wax on fruits animal, some use vegetable wax…ALPHA GAL is supposed to be only in Animals it is not supposed to be in Human blood it is transmitted after a Lyme Tic bites an animal then passes ALPHA GAL Sugar into Humans…2 EPI-PENS carried at all times diet is
for life, some are helped with steroids or an antihistamine…Refined sugars are in everything they are processed on bone spurs ‘contamination’ avoid white brown cane sugars buy only vegan approved
sugar white only or get sugar from vegs fruits…Some labs require an MD referral for testing the test is not FDA approved yet but is allowed for diagnostic testing…The test is under $50.00 USA check ask
ALPHA GAL sites online & talk to your Doctor…Some cannot tolerate the skin on chickens some can make sure foods are cooked well always…Change your cooking utensils pots pans do not cook met in
these items buy dish soap animal free & any pads used animal-free…3 out of 300 have only cleared ALPHA GAL some Doctors say diet is for life with 2 EpiPens always carried
I have ME/CFS/FM/MCS and co infections since 94. Is there any place to donate your body for research after passing?
Yes!
If you look on our Research Actions page, you can scroll down to see a brain and tissue bank: https://meaction.net/inspire/research-actions/
It may be dismissive of me, but I see any study using Fukuda criteria and I have little faith in it.
I have ME and would like to join a study as a patient. I live in Boston and believe there is a study at Mass General. How do I sign up?
Hello, John! Thanks so much for being willing to help their team and patients everywhere!
All currently enrolling studies are on the Research Actions page here on meaction.net. That’s meaction.net/Research-Actions.
However, it doesn’t appear that Mike’s team is recruiting for participants, yet; they’re still doing their best to fund the study. You can click on the link to the study here within the article and it shows the progress of their donations. It’s still a very small percentage of their final goal, so let’s share it around the internet and drum up some interest!
I will also double-check that this is the case with Mike — I’m going by what I see on their page, not by any conversations I’ve had.
Jaime
Call the Hospital Neurology unit also look into ALPHA GAL MEAT ALLERGY TESTING I THE USA or a good allergist familiar with Alpha gal testing
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