Trial By Error: Journalist Ryan Prior Discusses His Upcoming Book on Long Covid, The Long Haul

By David Tuller, DrPH

CNN journalist Ryan Prior is the author of an upcoming book on long Covid called The Long Haul: Solving the Puzzle of the Pandemic’s Long Haulers and How They Are Changing Healthcare Forever. Ryan, who is 32, has struggled with ME/CFS for half of his life—he first got sick in October, 2006, just before his 17th birthday, and was diagnosed the following year. His documentary about the illness, Forgotten Plague, was released in 2015.  

I’ve known Ryan for almost a decade through my reporting on ME/CFS. We recently spoke about his book, which will be published in mid-November, his current health, and the great need for services for those suffering from the long-term impacts of Covid-19.

2 thoughts on “Trial By Error: Journalist Ryan Prior Discusses His Upcoming Book on Long Covid, The Long Haul”

  1. This is an incredibly valuable conversation by two exceptionally dedicated ME advocates and compassionate souls to our community. I cheer you both on with much gratitude.

  2. The period the illness has to last as a necessary element of diagnosis (three months, six months) almost wipes out any possibility of recovery.

    Dr Ramsay said that the prognosis depended very much on the patient’s ability to rest from the inception. He prescribed six months of complete rest. It is notable that descriptions of the illness from this period, even from hostile accounts, states that only a proportion of patients became chronic. This implies that recovery was not an uncommon event.

    Now, during the period when a patient is experiencing the complex and alarming symptoms characteristic of ME/CFS and Long Covid, and is seeking a diagnosis and treatment – but cannot be given an immediate diagnosis – instead of immediately resting – the search itself will be preventing recovery.

    The essential information about pacing and the importance of limiting exertion comes too late.

    We’ve lost the concept of convalescence; our culture values the ‘fighter’ who keeps going despite illness, while ‘giving in’ is regarded with contempt.

    This all contributes to the level of disability which will be the outcome of not resting from the inception.

    We need to remove this delay required for diagnosis, or insist that patients rest while they wait for a final diagnosis. The pattern of symptoms is recognisable…people who have covid need to be told to keep resting even when they think they are better. The risk of permanent and severe disability caused by exertion needs to be spelled out and patients awaiting final diagnosis should be told they must rest in the meantime. (A doctor at one of the Invest in ME conferences said ‘we keep our patients in hospital while we are doing this testing. And my patients get better.’)

    This is a link to a short article I wrote in 2012 on this subject:

    You guys are doing wonderful things on behalf of ME/CFS patients and now Long Haulers, keep it up. We are grateful…..

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