Google Groups no longer supports new Usenet posts or subscriptions. Historical content remains viewable.

[CFS-L] Column: PASC: ME and Covid-19 (2)

1 view
Skip to first unread message

Dr. Marc-Alexander Fluks

Aug 28, 2021, 3:21:14 AM8/28/21
Source: Village News
Date: Auteur 27, 2021
Author: Shelby Ramsey

Inflammation, COVID-19 can lead to chronic fatigue

The more that medical experts study disease, the more frequently
inflammation seems to rear its problematic head. 'There are a lot of
people that think a lot of illnesses are related to inflammation,' said
Dr. Christopher Snell, former chair of the Chronic Fatigue Syndrome
advisory committee to the U.S. Secretary for Health. Snell, with over 30
years of specialized experience, is widely published and has lectured in
the U.S. and abroad, including for the Food and Drug Administration and
the National Institutes of Health. Surprisingly, Snell mentioned
cardiovascular disease. 'It is increasingly being looked at as an
inflammatory disease, with chronic immune activation as a significant
contributor to the illness.'

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is becoming a
clear-cut case. 'It's fairly obvious to many of us that ME/CFS is an
inflammatory illness,' said Snell. The number of people this condition
affects is significant. It is estimated there are between 836,000 and
2.5 million people afflicted with it in the U.S. alone.

Snell also said between 60 and 90% of ME/CFS patients have fibromyalgia.
Irritable bowel disease is a further frequent comorbidity. The telltale
signs of ME/CFS are 'profound fatigue, cognitive dysfunction, sleep
abnormalities, autonomic manifestations, pain, and other symptoms that
are made worse by exertion of any sort.'*

Sound like fibromyalgia? 'Very rarely do we see patients that have
symptoms of ME/CFS that don't have symptoms of fibromyalgia,' Snell
said. Since it's rare for a doctor to see an ME/CFS patient at the
inception of the illness, 'An estimated 84 to 91% of people with ME/CFS
have not yet been diagnosed, meaning the true prevalence of ME/CFS is
unknown,' he added.

We are hearing more and more conversations about immune systems. With
COVID-19, more people seem to be paying attention to building their
immune systems in hopes of staying well. Many people who have had
COVID-19 are experiencing long-term after-effects, including
significant, ongoing fatigue. We are hearing people say, 'My immune
system is weak;' 'I'm trying to build up my immune system,' and 'It all
comes down to immunity.' Snell explained, 'The immune system is
incredibly complex.' But he did identify steps that are seen frequently
in disease.
1. 'We have inflammation.'
2. 'We have an immune response and then all the consequences of that are
associated with an extended immune reaction that can ultimately lead
even to autoimmune illnesses as well.'

HIV is the 'classic chronic immune activation illness,' Snell said,
'There is a lot of inflammation in HIV.' Reflecting back to other
epidemics of the viral nature, Snell said, 'If you survive[d] Ebola,
there is a good chance you are coming down with a compromised immune
system and symptoms that look very much like ME/CFS.' The same goes for
the aftermath of SARS, as the data 'shows people are still suffering
symptoms years later that they can't relate back directly to the illness

Snell places importance on truly evaluating symptoms rather than the
'diagnosis.' As most of us know, symptoms can be explained to three
different doctors and we may get three different diagnoses. For ME/CFS
and fibromyalgia, 'very often we are looking at symptoms on the same

Symptoms that are most common with ME/CFS include tiredness, fatigue,
pain, dizziness, 'brain fog,' and sleep-related problems. Pain is a
'predominant feature of fibromyalgia,' Snell said. 'We [hear about] a
lot of headaches and sometimes patients will describe it as a migraine;
sometimes patients will describe it as a tension headache,' Snell said.
Occasionally Snell himself suffers from migraine. He too has learned to
identify triggers, establish wellness practices, and has the added layer
of compassion for being able to relate to those with migraine. With
brain fog, Snell said patients 'can't think, they can't form sentences.'
He said brain fog is being seen in a segment of COVID-19 patients.

It's expected that the COVID-19 pandemic will allow for additional
research of ME/CFS including 'access to cadavers, which very rarely
happens with ME/CFS and [the] ability to track people long-term,' he
said. He also stated that there is a 'strong probability that there will
be [the first] animal model. Once you have an animal model it really
speeds up the research process to identify aspects of the illness that
are difficult to talk about, difficult to identify, and also to try out
potential treatments.'

Since ME/CFS is rarely identified at onset, unfortunately a diagnosis of
ME/CFS can take years to receive and even more time following for it be
recognized by the medical community. Given these factors, 'research
suggests its most common in people between 40 and 60 years of age,'
although no age group is excluded Snell said. When a child is diagnosed
with ME/CFS, they 'tend to do better.' Although ME/CFS does not go away,
it has been suggested that children learn to adapt and deal with the

WorkWell Foundation offers the Cardiopulmonary Exercise Testing (CPET)
to assist in measuring ME/CFS. WorkWell's test is performed on a bike
with the test lasting from 8 to 12 minutes, with the patient 'only at
[their] peak for a minute or two of that time,' said Snell. The test is
tried and true - a very well-established test. The research and
guidelines for interpreting results has all be done in the category of
heart disease. Snell said the CPET is looking at 'the anaerobic
threshold - the level above which you're going into uncharted
territory.' Once you've gone into uncharted territory - symptoms
commonly appear.

Snell explained that many patients they see have chronotropic
incompetence (in layman's terms: a blunted heart rate). Chronotropic
incompetence is 'the inability of the heart to increase its rate
commensurate with increased activity or demand [and] is common in
patients with cardiovascular disease.'** 'Their heart rate is never
going to go up to its predictive maximum,' said Snell. 'So, if you keep
trying, you could absolutely be at your limit but you're still way below
your target heart rate.' This too is common for fibromyalgia patients.
Snell said many migraine patients experience this as well. 'A lot of
people with migraines are on beta blockers [which] do cap your peak
heart rate,' he explained. 'So normal recommendations for exercise don't
apply to anybody on beta blockers.'

Snell emphasized the key necessity of staying aware of how you feel, 'so
keep track of what you were doing the day before you got PEM
(post-exertion tiredness).' These would be denoted 'triggers.' These
would be the 'activities that take more than aerobic energy to perform,
so you're going into that anaerobic zone which occurs at much lower
workloads in people with ME/CFS,' he said. It's believed that ME/CFS
patients don't use oxygen well, even though the oxygen is available. 'We
think it's a metabolic illness,' said Snell. 'They are not able to fully
utilize the oxygen that's available to them.'

Snell underscored the importance of living a healthy lifestyle, 'A
healthy diet never did anyone any harm,' he said. 'We know that it's
beneficial for the immune system. So that's a good thing to do.' He has
found that the people that 'cope best with [ME/CFS] and bring some
normalcy to their lives are people who recognize what brings on the
symptoms, and they avoid PEM.' It requires a patient to be mindful of
the activities they are performing each day (no matter how big or
small), acknowledge how they are feeling later that day and the days
that follow, and adjust accordingly. 'If you don't trigger that
inflammatory response and that immune response you'll function at a much
higher level and you'll avoid a lot of the [negative] symptoms,' Snell
said. He does understand that modifying life in this way poses
restrictions and doesn't allow a person to do the things they may want
to do.

Snell had a good analogy. 'You're going to have to pay back essentially
the loan. You've borrowed against future energy consumption and you're
going to need to pay that back.' 'Having sympathy for yourself as well,'
is crucial, Snell said. 'You have to recognize that [you're] sick and
it's not [your] fault.'

*Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Redefining
an Illness, Report Guide for Clinicians, Institute of Medicine.
**Brubaker, P. H., & Kitzman, D. W. (2011). Chronotropic incompetence:
causes, consequences, and management.

(c) 2021 ROAR Online Publication Software
0 new messages