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“ One of the key points in the draft guideline is that exercise is not a treatment or cure for ME / CFS and should not be presumed to be safe for those with this disabling and often neglected illness ”
“ We believe that the insight we gain from this research [ on long COVID ] will also enhance our knowledge of the basic biology of how humans recover from infection and improve our understanding of other chronic post-viral syndromes and autoimmune diseases , as well as other diseases with similar symptoms ,” wrote Dr Collins .
One prominent example is Dr Nath ’ s research , where extensive examinations will be conducted on patients with long COVID ( including neurocognitive , blood , imaging , and immunological tests ) to untangle CFS-like symptoms .
“ We have multiple goals ,” he said . “ We want to find objective measures to define what these patients actually have and understand their pathogenic mechanism so that we can develop treatments to fix it .”
Treatment options and prognosis Given the huge number of people who are , and will be , suffering from long COVID , there ’ s a great urgency to improve therapies to manage , if not cure , it .
In the case of patients with lung inflammation , the course of action remains to be established but “ steroids work to dampen down inflammation ,” said Dr Jenkins , and this will hopefully reduce the risk of longterm scarring . It ’ s also helpful to cut down on alcohol , avoid smoking , and promote clean air , as these are the factors we can control , in contrast to genetic interactions .
However , it ’ s much more challenging to deal with long COVID symptoms that don ’ t seem to be linked to specific biological damage , but there are treatments .
For example , in the non-medical category of brain fog , options include activities that can improve cognitive functions , such as reading , summarising stories , and memorising things like a grocery list .
Patients with POTS can benefit from diets high in fluids and salty foods to increase blood volume as these facilitate its flow to the heart and brain . Medications can also help regulate blood volume ,
Patients with POTS can benefit from diets high in salt reduce heart rate , and induce the narrowing of blood vessels .
A tailored physical therapy to improve on exercise tolerance is often prescribed as well .
“ A very specific exercise protocol works very well , but it has to be scheduled very carefully because , in a lot of people , POTS symptoms flare up after regular exercise like going to the gym ,” explained Dr Chung . “ The basic principle is that they have to go through very low levels of preconditioning exercise for very long times , they can never overdo but at the same time they cannot give up . It has to be very consistent and it usually takes more than several months .”
In the management of ME / CFS-like symptoms , the risk of flare-ups after excessive exercise is a contentious topic among experts and activists alike .
Last November , the UK National Institute for Health and Care Excellence ( NICE ) dropped its longstanding recommendation that patients with ME / CFS undergo graded exercise therapy ( GET ) where they are advised to go through incremental increases in activity , because of the harm caused to people who “ exceed their energy limits .”
“ One of the key points in the draft guideline is that exercise is not a treatment or cure for ME / CFS and should not be presumed to be safe for those with this disabling and often neglected illness ,” said Adam Lowe , a lay member of the guideline committee , in a press release . “ The approach it recommends is a pragmatic one which allows patients to self-manage themselves within their daily limits , while using readily available interventions to address the most serious of their symptoms first .”
Despite this new NICE recommendation , some experts remain convinced that GET is a good option for some patients with ME / CFS or long COVID .
“ It is crucial to acknowledge that not all long Covid patients will behave like CFS ,” Dr Manoj Sivan , an associate clinical professor and consultant in rehabilitation medicine at the University of Leeds who runs a long COVID clinic in the city , told the Guardian . “ Fatigue is multifactorial , and there are some patients with deconditioning and weakness who might benefit from GET ,” he said .
A trio of medical experts even submitted a letter in the Guardian to tout the benefits of GET . “ We do not know that graded exercise therapy is detrimental to recovery from the post-Covid fatigue syndrome . There are no such studies . In contrast , we know that graded exercise therapy is an effective treatment for chronic fatigue syndrome ( or ME ), a clearly related condition ,” Dr Alastair Miller , Professors Paul Garner and Peter White wrote .
But the safety of GET was disputed by # MEAction UK , citing strong survey data of most patients with ME / CFS reporting a deterioration after GET . Part of the challenge is that there are no one-size-fits-all treatments , and even when some of them provide benefits , they can ’ t erase the condition .
“ Fatigue is one of the most difficult symptoms to
36 JUNE 2021 GlobalHealthAsiaPacific . com