ME/CFS in 2017 - A Quick Recap

Between research making big strides in getting to the bottom of ME/CFS, and finally getting some public awareness and understanding regarding the severity of this illness, 2017 was a promising year for those of us living with ME/CFS or with loved ones suffering from it. I’ve done my best to compile an easy-to-read, brain-fog friendly recap of what I consider to be the main, most encouraging things that have happened last year regarding ME/CFS.

These are things that give me hope that we may in the not-so-far future finally start seeing cures and even preventions for this awful chronic illness, both because of the huge leaps being made in scientific research and because the more people start to take it seriously and jump on board with trying to help find a cure, the quicker this whole thing could gain momentum.

Disclaimers: Please bear in mind that I am writing this from the UK, and while I will do my best to keep it relevant for all parts of the world this information may end up being mostly UK-based due to my search engine being geographically tailored. Also, as this is written by someone with brain fog, I may have missed out articles and research because I found them too difficult to read and understand - and consequently felt others may have the same struggle. I’ve tried to keep this very short and to the point, but have included links to more information on each subject.

If you would like to see a more extensive archive of information, I would recommend going to the ME Association website archive at www.meassociation.org.uk/year/month/

January 2017

-       A non-invasive study at the University of Washington, led by Kevin Conley, PhD, and David Maughan, PhD, measured and compared muscle metabolites in ME/CFS patients and got results which showed abnormal levels of certain metabolites compared to that of people without ME/CFS.

-       A study that managed to identify specific biochemical changes in ME/CFS patients vs people without was published in the ‘Journal of Clinical Investigation’. The authors specifically looked an enzyme which is a “key regulator of energy metabolism and lactate production”. In their study they found “significant differences that implicated reduced function of this energy-regulating enzyme.”

-       Jen Brea’s TED Talk about ME/CFS called “What happens when you have a disease doctors can’t diagnose” went live on the 17th of January 2017, and got over 365,000 views in the first week. Jen Brea’s documentary film about ME/CFS ‘Unrest’ also premiered in the documentary competition at the Sundance Film, but was not released to the public.


-       Assessment of Individual PACE Trial Data: in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Cognitive Behavioral and Graded Exercise Therapy are Ineffective, Do Not Lead to Actual Recovery and Negative Outcomes may be Higher than Reported
CBT and GET have been much debated and controversial proposed treatments for ME/CFS for a long time. In January of this year, the study was finally proven to have skewered results, and when they looked at the data again without all the altered information, they got very different results which pointed towards neither treatment being effective and in some cases causing harm for the patient. 


February 2017

-       “The National Institutes of Health, in Partnership with the Centers for Disease Control and Prevention launched a Common Data Element Working Group with the intent to streamline medical and research terminology in ME/CFS.” This is a big step in terms of consolidating many different independent ME/CFS research projects, and putting together all the pieces of the puzzle.

-       “Science Minister Leeanne Enoch said researchers from Griffith University’s National Centre for Neuroimmunology and Emerging Diseases (NCNED) have found strong evidence that chronic fatigue syndrome was associated with a dysfunctional immune system. [The researchers] identified a dysfunctional cell receptor in the immune system which seems to be at the core of the problem,” Ms Enoch said. “This discovery confirms what people with these conditions have long known – that it is a ‘real’ illness – not a psychological issue.”
“The NCNED also received a $4 million grant from the Stafford Fox Medical Research Foundation – the largest grant ever provided for CFS/ME research.
Professor Don Staines said this funding would be used to investigate the commercialisation of a diagnostic test the research team were developing as well as potential treatments.“

-       Evidence is mounting that chronic fatigue syndrome (CFS) is caused by the body swapping to less efficient ways of generating energy.
the cells of people with CFS stop making as much energy from sugar as usual, and start relying more on lower-yielding fuels, such as amino acids and fats. This kind of metabolic switch produces lactate, which can cause pain when it accumulates in muscles.
Together, this would explain both the shortness of energy, and why even mild exercise can be exhausting and painful.”

March 2017

-       “Biological underpinnings of chronic fatigue syndrome begin to emerge”

“Physicians used to dismiss the disease as psychosomatic, but studies now suggest that it involves problems in the chemical reactions, or pathways, within cells. “We now have a great deal of evidence to support that this is not only real, but a complex set of disorders,” says Ian Lipkin”

http://www.nature.com/news/biological-underpinnings-of-chronic-fatigue-syndrome-begin-to-emerge-1.21721


April 2017

-       Chronic fatigue syndrome has been linked to changes in the gut’s bacteria”
“People suffering from CFS, also known as ME, often also have irritable bowel syndrome. In the new study the researchers investigated the link between the two, showing that there were clear gut bacteria changes associated with CFS”
“Researchers showed that the bacteria in the guts of 50 people with CFS were different from those of people without CFS and that this was true whether or not they also had irritable bowel syndrome, a condition that causes digestive problems. Ian Lipkin from Columbia University said that it was impossible to tell whether the changes were a cause or consequence of the illness but that it was not implausible that the actions of gut bacteria could make people feel more tired.”

May 2017

-       ‘#MillionsMissing’ is a worldwide ME/CFS protest started by The MEAction Network, a patient advocacy group. This became a particularly popular form of protest for ME Awareness Day (May 12th), and Here is an account of just one of the many ‘Millions Missing’ protests across the globe that have caught people’s attention through their unusual approach to protesting.

July 2017

-       “Researchers at the Stanford University School of Medicine have linked chronic fatigue syndrome to variations in 17 immune-system signaling proteins, or cytokines, whose concentrations in the blood correlate with the disease’s severity. These finding provide evidence that inflammation is a powerful driver of this mysterious condition.”

-       “Brain structural differences are associated with unrefreshing sleep in CFS”
I tried reading this and understood approximately none of it, but thought it seemed important and was probably worth including.

August 2017

-       CDC removes CBT and GET as recommended treatments for ME/CFS”

Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) were proved in January 2017 to be not only ineffective but also harmful in some cases.


-       This is a comprehensive summary by the ME Association of the results of research into cytokines and the role they play in ME/CFS up until August 2017.
A super quick summary is that there are differences to be found in the cytokines in people with ME/CFS vs people without, provided you have a pretty specific idea of what you’re looking for.

September 2017

-       Jennifer Brea, director of Unrest, was interviewed on BBC Radio 4’s ‘The Film Programme’. You can listen here provided you have a valid UK TV license, although I don’t know if or when it may be removed from BBC iPlayer.

October 2017

-       Unrest, the documentary about ME/CFS, was screened in UK Parliament.

-       recent study reported differences in brain structure in people with chronic fatigue syndrome (ME/CFS). This was not the first paper to report such aberrations, but it was the first to report increased Grey Matter volume”

-       “ME Association trustees and staff were over the moon when we heard that the CureME team at the London School of Hygiene and Tropical Medicine had received a new grant of $2.1 million from the National Institutes of Health (NIH) in America.
The funding represents the biggest ever single investment in biomedical research to happen in the UK and it will enable a current project, that is searching for disease biomarkers, to be extended for another 4 years – until 2021.”

November 2017

-       The disease has a clear link to 17 immune system proteins, including 13 proteins that are pro-inflammatory.
This proved what scientists had suspected — that inflammation is the prime driver behind the disease”
Jose Montoya led a 7 year study that in 2017 resulted in very promising results.
 “Our findings validate their symptoms — that their illness is real and has a biological basis. Now that we know that this is something real, ingrained in the biology of the body and the immune system that explains why these patients are so sick, we could end up with a blood test, but equally or more exciting, now we can find drugs to conquer the disease.” Montoya said.

-       New Scientist: Blood cells in chronic fatigue syndrome are drained of energy
“Across almost all measures of energy capacity, the cells from people with CFS were weaker compared with their healthy counterparts. If other cells are equally compromised, it could explain why people with the condition are often bed- or wheelchair-bound for months, and struggle with even modest physical exertion.”

-       Jennifer Brea and Dr. Charles Shepherd were interviewed about ‘Unrest’ on BBC Breakfast. You can watch the clip at the link below.

December 2017

-       ‘Unrest’ was shortlisted for an Oscar documentary award. *I previously mistakenly wrote that it lost to another movie, but had mixed up the 2017 Oscars with the 2018 Oscars, which have not yet taken place.*

-       “ME Association Summary Review: Changes in ‘brain chemistry’ after exercise in CFS, Gulf War Illness and sedentary controls”

Special 2018 Bonus

-       ‘Unrest’ is now available globally on Netflix and iTunes!

I hope you've found this easy to follow, and informative. I sincerely hope I haven't accidentally misreported or missed out any important information, and if I have then please inform me and I will rectify any mistakes ASAP!

Sending love and hugs to you all, and I hope you all had a wonderful Christmas and New Year!

Isabel 

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