News round up: Momentum is building for ME/CFS!

Our Microbe Discovery Project team had some time unplugged through the holiday period but while we were away momentum was building in the ME/CFS research world!

Straight off the bat there was some big news from Norway just before Christmas! Drs. Fluge and Mella et all AKA the Norwegian team, published a paper titled ‘Metabolic profiling indicates impaired pyruvate dehydrogenase function in myalgic encephalopathy/chronic fatigue syndrome’ in the Journal of Clinical Investigation Insight. This work in essence points to a possible PDH ( pyruvate dehydrogenase) block in people with ME/CFS. This is a key metabolic enzyme in the TCA (tricarboxylic acid cycle). Yes, that is an impairment in a very important part of energy metabolism within cells.

You can find very helpful write ups about the papers findings by the researchers themselves here and by Cort Johnson here. Dr Fluge has stated himself there is a long way to go but this is an incredibly interesting paper and we really encourage people to read the write ups. There was also coverage in Medscape by Miriam E. Tucker and ME/CFS was a top clinical trending search topic on Medscape for at least one week in January.

The Norwegian government is ahead of the pack, seeming to be listening and acknowledging the lack of research funding, education, social support and care needs for patients and families. This goes all the way to the top, check out a google translate of the Prime Minister of Norway Erna Solbergs recent blog about ME/CFS.

Their research resulted in excellent mainstream media TV coverage in Norway that you can catch here with English and Spanish subtitle options. Dr. Fluge also gave a brilliant interview in the studio.

 

 

Metabolomics is proving to be a very useful research tool in studying ME/CFS. Dr. Maureen Hanson et all published in the Journal of Molecular BioSystems a paper titled ‘Metabolic profiling of a myalgic encephalomyelitis/chronic fatigue syndrome discovery cohort reveals disturbances in fatty acid and lipid metabolism’ adding more evidence regarding metabolic dysfunction.

It has also been great to see that the UK ME Association has reported making inroads with crowdfunding to help fund some needed metabolomics replication work. This research by Dr. Karl Morten at Oxford University could also lead to larger planned work, as they have detailed in this blog by Sarah Staples. This article also broadly explains PDH and the TCA cycle more simply for people too – that’s not easy!

 

 

Dr. Chris Armstrong of Melbourne University’s Bio21 Institute and their team have published a new paper in the Journal of Metabolomics with respect to the microbiome titled ‘The association of fecal microbiota and fecal, blood serum and urine metabolites in myalgic encephalomyelitis/chronic fatigue syndrome’. This got some good coverage in the University of Melbourne Online Magazine ‘Pursuit’. Dr. Armstrong is currently working on a longitudinal study where some of the details were discussed in a very recent Australia Huffington post article by Emma Brancatisano:

A recent study has uncovered new changes hinting that the composition of the gut could be skewing the body’s metabolism — or how our bodies convert food into energy — of those with ME/CFS. And the change is a subtle but telling shift in the body’s source of energy production: from sugars to amino acids (the beads that make up protein).

“Our food gets broken down by bacteria and these things called short chain fatty acids … Our study has shown an increase of bacteria that are better at fermenting amino acids to these acids,” Armstrong said.

“No one has found any downsides to short chain fatty acids — they are a positive thing that are being produced by the bacteria in our gut. But we do believe this increase in short chain fatty acids may be causative or additive to the metabolism alteration we see in those with the disorder.”

As a result, a cycle of increased short chain fatty acids and reduced amino acids leads to a lessened ability for the individual to create digestive enzymes and mucins which stabilise a healthy gut. Such alterations may be behind or a part of associated fatigue symptoms. “This cycle is our hypothesis as to possibly being important for maintaining the disorder, while not necessarily being the trigger,” Armstrong said.

Now, Armstrong and his team are working on longitudinal studies that will make alterations to patient’s diets to study the potential benefits. “We might look at giving them more amino acids or more lipids in a metabolised form and seeing whether this aids them,” Armstrong said. “If we can induce improvement and notable changes in their bacteria and metabolism then we may develop markers and more importantly a system for monitoring and treating individual patients.”

 

A UK Rituximab trial is also now set to be happening in Norwich. Invest in ME charity have been working for a long time with Professor Jo Cambridge at the University College London and Professor Simon Carding at the Institute of Food Research (IFR) and their respective teams. A Center of Excellence is being developed and collaboration with Norway is in the works. Recent talks were held at IFR which you can view here. It was also unusual to see good coverage through UK local BBC TV which featured this story:

 

An excellent review paper was also published by Jason, Dimmock and Mirin in the Journal of Medicine and Therapeutics titled ‘Estimating the disease burden of ME/CFS in the United States and its relation to research funding’. This review reports that in order for ME/CFS to be funded commensurately with its impact or burden in the united states, it would require a 27-fold increase in funding and the amount should be up to at least $188 Million per year! This is important work that helps strengthen advocacy and can also help to target policy.

 

And finally, the NIH formally released the RFA funding announcements for ME/CFS at the very end of January. The funding is just shy of $30 Million and this will be awarded over a 5 year time frame.

•For Data Management the NIH will “commit an estimated total of $750,000 direct costs to fund 1 award contingent upon NIH appropriations and the submission of a sufficient number of meritorious applications.” and “Applicants may request up to $750,000 direct costs per year.”

•For Collaborative Research Centers the NIH “intends to commit $6 million in FY 2017 to fund 2-3 awards. Future year amounts will depend on annual appropriations” and “Application budgets are limited to $1,200,000 per year, and need to reflect the actual needs of the proposed project.”

Momentum is building – it isn’t fast – but it is happening

More soon on what this NIH funding announcement means for MDP fundraising and the Columbia University Center for Infection and Immunity’s huge study for ME/CFS.

Funding is too slow and too low but as research builds and awareness increases we can only grow in strength. We will welcome more champions to our midst. Please keep donating, advocating and sharing!!