Last week, the Oxford Health NHS Foundation Trust – the agency that oversees NHS services in the Oxford area – posted a guide about coronavirus and fatigue. The pamphlet caused an uproar in the ME/CFS community because it conflated post-viral fatigue with ME/CFS. The document is misleading in its inaccuracies and outdated advice, suggesting that recovery from viral illness is hampered by harmful beliefs about exercise. Implicit in the document is that ME/CFS is caused by deconditioning. Not surprisingly, the advice given to patients recovering from COVID-19 stems from the same harmful approach applied to ME/CFS patients in the United Kingdom and elsewhere: graded exercise and cognitive behavioral therapy.
The condemnation of the pamphlet and subsequent response has been swift. Physios for ME sent an
open letter
signed by many advocates for ME/CFS, including Workwell Foundation, calling for the immediate withdrawal of the pamphlet. The Oxford Health NHS Foundation Trust has taken down the document, but it can still be viewed
here
.
According to David Tuller, DrPH
, the pamphlet is credited to the “psychosocial response group” or PRG. Dr. Tuller has filed a freedom of information act to learn more about the participants in this group and the evidence (or lack thereof) that was used to write the pamphlet.
There is growing concern that COVID-19 will lead to a large new cohort of ME/CFS patients. It is essential that COVID-19 patients who struggle to recover from infection by the SARS-CoV-2 virus are given accurate information. Exercising away fatigue is contrary to the advice typically given people recovering from viral illnesses, which calls for adequate rest and pacing of activities.
On a positive note,
legislative
and
research
efforts are underway to address the looming health crisis and to ensure COVID-19 patients who never recover are given the correct guidance and adequate care.
Workwell Foundation will be following this story closely and will provide updates on advocacy and research linking COVID-19 to the emergence of new ME/CFS cases.
We have published extensively and have been featured in
videos
about the
harms of graded exercise
for ME/CFS patients. We also have written a
letter
for patients to share with their healthcare providers about why graded exercise is not appropriate for ME/CFS patients.
