Workwell Foundation

The Workwell foundation research team developed the CPET 24hr repeat test protocol to demonstrate post-exertional symptoms. Cardiopulmunary exercise stress testing is used in many conditions, including cardiac failure. Normal controls do an exercise test which causes muscle soreness but recover within 1-2 days (study- vanness journal of women’s health 2010), whereas ME/CFS patients have an amplification of symptoms and worse results the following day. CPETs show heteogenity in ME/CFS- that is, CFS is a mixed group of subtypes with high and low functioning, length and magnitude.

Workwell recommend management of energy expenditure, especially pacing by heart rate monitoring followed by recumbent exercise remaining close to resting heart rate, with the understanding that patients with ME do not condition aerobically the same as healthy controls. This aims to reduce post-exertional symptoms which occur as a result of immune response to exertion.

In ME/CFS patients, the anaerobic threshold can be as low as 55% of maximum heart rate, so this number can serve the upper limit for activities. ( Estimated as 226 – your age = ______ x 0.55 = anaerobic threshold). A CPET will tell you exactly. 100-116bpm.

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Mark Vaness is one of the Workwell researchers. His talk (below) is an overview  (summarised here): Balancing the need for rest and recovery with the need to do physical activity to maintain physical function.

Metabolics

Metabolically, there may be an inability for the muscles to use oxygen.

Energy systems are aerobic (long-term, used to maintain posture, to walk, low level exercise, uses oxygen, creates c02) anaerobic/glycolitic (short-term, creates lactic acid). In ME/CFS, impairment is seen with ability to exchange air, the heart rate to rise and deliver blood, blood pressure and redistribution of blood flow to brain and muscles- all the systems which need to respond to exercise. As a result, aerobic capacity is diminished. This is worse again when post-exertional.

The lack of improvement in aerobic functioning with exercise suggests it is not due to deconditioning but due to a damaged aerobic system. Aerobic creates 30-36 ATP per glucose, whereas the anerobic system  creates only 2 ATP, making it inefficient.  The anaerobic system is designed for short term use only, but with pacing activities to under 2 mins, can be used as the dominant system. This involves avoiding prolonged walking or standing.

Cardiovascular

The heart has its own intrinsic activity: through the adrenal gland, the vagus nerve withdraws, sympathetic innervation increases, this allows heart rate to rise with exercise.

In me/cfs, there is chronotopic incompetence- a failure of the heart rate to rise adequately in response to exercise, this is recognised in cardiovascular disease where it causes exercise intolerance. (This is inline with abnormally high sympathetic activity at rest, and low during exercise). This worsens again with stress, such as post-exertional exacerbation.

There is a diminished cardiovascular operating window- which becomes narrower with PENE. Heart rate monitoring allows patients to do more within this narrow range.

There is also diminshed systolic blood pressure response resulting in poor blood flow and supply of nutrients to muscles. Dysautonomia: some patients heart rate will bottom out/drop during exertion.

Salt does not just improve blood volume- improves autonomic function by activating the forebrain areas- this is inline with ‘adrenal cocktail’ salt improvements.

Regarding hypoglycemia symptoms experienced by patients, this is related to autonomic nervous system activity and chronotropic incompetence: hepatic glucose production maintains glucose supply during activity. If this is impaired to the heart, logically will be impaired to liver as well. Always ingest carbs before activity.

Medication for POTS is protective of the heart but may exacerbate the underlying pathology with physical capability.

Suggested aetiologies: viruses impair the mitochondria, theres fewer, they dont fuse, OR something is impaired in the mitochondria for how it deals with oxidative stress, sequestering of hydrogen ions is messed up OR oxygen delivery: heart doesnt deliver well, oxygen carrying capacity of the blood is damaged.

Pulmonary system: air flow problems

Breathing isn’t working properly with diminished ventilatory response to activity, the same as in chronotopic incompetence. Evidence of carbon dioxide retention in blood and lungs (CO2 combines with water to form the potent carbonic acid, a big problem), poor oxygenation, and respiratory fatigue. Chemosensitive areas trigger the brain stem to breathe more, these must be blunted to allow less breathing. Very low amounts of expired air in patients even at baseline. Belly breathing (parasympathetic) is very energy efficient, chest breathing is much harder.

Analeptic therapy (restorative) is recommended more so than aerobic exercise. With the aim of maintenance without decline, like a turtle, to improve quality of life. Functional movement that’s restorative. The body needs to be able to recover from the damage of exercise, and in ME/CFS patients, recovery is impaired to a greater or lesser recovery. Even just maintenance without further damage is a worthy goal. Aquatic therapy can help with venous return, with buoyancy. For bedridden patients, the emphasis is on maintaining joints and low level stretching and stretching.

The Workwell foundation also recommend belly breathing, pursed lip breathing (in for 2 out for 4, as the positive backpressure favours alveolar expansion, releases trapped air, used at altitude), ‘energy conservation therapy’ (sitting rather than standing, especially in the shower, use terry cloth robes, taking rest breaks, activity planning eg saying no, accepting help, prioritising), working with good times of day (usually early afternoon, not mornings), salts, compression stockings. Doing the same task but much slower with rests inbetween avoids post-exertional malaise.

Full talks:
Part 1- youtube.com/watch?v=FXN6f53ba6k
Part 2- youtube.com/watch?v=7BceGgEdMpA&spfreload=1

There is also a second webinar recording.

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Workwell has published research and open letters available from their website. From their ‘Conceptual model for physical therapists…’

The creatine phosphate-adenosine triphosphate immediate (teal line) and anaerobic short-term (red line) energy systems predominate during the first 2 minutes of activity (dashed black line). Activities longer than 2 minutes in duration are characterized by a rapid decrease in the contributions of these short-term energy systems and an exponential increase in the contribution of the aerobic long-term energy system (blue line).

training begins with activities that provide stress to the unimpaired anaerobic energy system before the impaired aerobic energy system is stressed… we advocate a training approach in which initial therapeutic activities are short duration, low intensity, and directed toward specific contributing impairments in body structures and functions.

we suggest that clinicians may approximate the HR at the AT by calculating 55% of the HR at the V̇O2max as a starting point

we suggest that a 10% margin below the estimated HR… to account for variability and ensure that an individual’s exertion remains below the AT. The monitor’s alarm should be set to sound if the HR exceeds 10% below the HR at the AT.