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/
(example:
www.meassociation.org.uk/2017/07/)
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.”
https://www.newscientist.com/article/2121162-metabolic-switch-may-bring-on-chronic-fatigue-syndrome/
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.
-
“A 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!
Sending love and hugs to you all, and I hope you all had a wonderful Christmas and New Year!
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