Sunday, March 31, 2019

Life as you know it....

Prof Ron Davis, world renowned scientist, tells you why you should all be afraid of CFS/ME. It could happen to you. "Your life as you know it, will be over"... take notice. Share this post. We need donations to find a cause and treatments https://vimeo.com/327053612

Monday, March 25, 2019

Meta-Analysis Shows Blunted Heart Rate Contributes to Activity Intolerance in People with ME


Meta-Analysis Shows Blunted Heart Rate Contributes to Activity
Intolerance in People with ME

March 23, 2019
By #MEAction

The Workwell Foundation issued the press release below about its
meta-analysis of 20 years of studies that shows "overwhelming
evidence" of chronotropic incompetence in people with ME/CFS, which
contributes to activity intolerance in people with myalgic
encephalomyelitis (ME).

A normal response to exercise is an increase in heart rate. Failure of
the heart to keep pace with an increase in demand is called
chronotropic incompetence (CI), a disabling condition that causes
activity intolerance and often leads to poor health outcomes.
According to a new meta-analysis from researchers at Workwell
Foundation and the University of the Pacific, CI is commonly found in
people with ME/CFS, a complex neuroimmune disease.

The meta-analysis, published recently in Frontiers in Pediatrics, drew
on 20 years of studies involving 1- and 2-day cardiopulmonary exercise
testing (CPET). When comparing heart rate data between ME/CFS patients
and matched controls, the authors asked if chronotropic incompetence
contributes to the activity intolerance that underscores this disease.

They found overwhelming evidence of CI in ME/CFS patients, including
both men and women, relative to healthy subjects. In a finding unique
to this disease, the study showed that the heart rate response was
even lower on the second day of repeat exercise testing at both peak
and sub-peak levels, putting the oxygen costs of even simple
activities above a safe heart rate threshold for many.

The magnitude of CI also depended on disease severity, with the most
severe patients experiencing even greater differences between actual
and predicted maximum heart rate.

According to Workwell Foundation, CI can make a bad situation worse. A
blunted heart rate in response to exercise could exacerbate the
already low oxygen consumption found in this disease and further limit
levels of activity. CI further compounds post-exertional malaise
(PEM), a worsening of symptoms in response to activity.

The authors hypothesize that an abnormal heart rate response to
exercise is likely due to impaired autonomic regulation of the heart.
They suggest new research directions that should be explored to better
understand what drives the patterns discovered in this paper.

These findings send an important message to health care providers and
patients trying to manage their illness through pacing activities.
Pacing plans based on age-predicted heart rate thresholds should be
viewed with caution because the chronotropic response is impaired in
people with ME/CFS.

The full chronotropic incompetence study titled, "Chronotropic
incompetence: an overlooked determinant of symptoms and activity
limitation in myalgic encephalomyelitis/chronic fatigue syndrome," is
available online in the open-access journal Frontiers in Pediatrics.

Workwell Foundation a fiscally-sponsored program of United Charitable,

a registered 501c3 organization.

*  *  *

If you would like more information about this topic, or to schedule an
interview with Staci Stevens, please contact her at 209.599.7194 or

Sunday, March 24, 2019

"M.E. Patients and the Researchers that Silence Them"

"M.E. Patients and the Researchers that Silence Them" (March 19)

i.e.

Extract:
Quite simply, what I, and patients like me want, is a commitment to
biomedical research funding, an awareness among doctors that Graded
Exercise Therapy, in particular, harms our chances of recovery, and
for the stranglehold of psychiatric funding to end. We are not
rabble-rousers, and nor are we anti-science; in fact, we are patently
far more committed to scientific enquiry than the psychiatrists
currently rubbishing us in the press. But we are also unwell, unheard,
and unable to move forward with our lives until these attitudes
change.

As Merryn Crofts mother says:

"More knowledge, education and awareness is desperately needed to stop
the stigma, increase research, and stop the continued suffering of
thousands of people with ME.

"My daughter did not die of 'fatigue'. She died due to multi-systemic
neurological M.E. and change needs to happen — now."