Covid-19: What do we know about “long covid”?
BMJ 2020; 370 doi: https://doi.org/10.1136/bmj.m2815 (Published 14 July 2020) Cite this as: BMJ 2020;370:m2815Linked Opinion
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Dear Editor,
Persisting symptoms after COVID-19 is also recognised as a serious problem in the Netherlands. Many general practitioners have been confronted with these patients. Patients can register and share their experience on a website of Lung fund (coronalongplein.nl). Now, we estimate that the number of patients with ‘long covid’ is 10,000 to 20,000 in our country.
We have undertaken a series of actions to address this problem. First, we have developed rapid guidance to support clinicians in primary and secondary care in decision making on diagnosis and treatment. Due to lack of evidence, most recommendations are based on expert opinion.
Second, the Dutch government has decided to reimburse physiotherapy, exercise therapie, ergo therapy and dietitics in primary care to a maximum of 6 months. The results of individual treatment will be monitored and evaluated systematically.
Third, research has started on follow-up of patients with covid-19 funded by The Netherlands Organisation for Health Research and Development (ZonMw). One of the research aims is to identify predictors of chronicity,
We hope that more evidence will become available soon on the large group of patients with covid-19 that have not been admitted to hospital. This will help to develop evidence-based guidelines and to contribute to effective management of patients with persistent symptoms.
Yours sincerely,
Jako Burgers
Competing interests: No competing interests
Dear Editor,
I was glad to see your article 'Covid-19: What do we know about “long covid?' (BMJ 2020;370:m2815), as it is important that this condition receives the attention of the medical and research community.
But please, let us be cautious of the words we use.
Prof Paul Garner’s illness is described as “his seven week experience”, which suggests that it was time-limited, and his symptoms have resolved, yet he has published another blog in the BMJ on the 23rd June (Paul Garner: Covid-19 at 14 weeks—phantom speed cameras, unknown limits, and harsh penalties) making it clear that these symptoms were still ongoing at the time. Further communications in the media suggest his symptoms are still continuing now (mid-July). Paul Garner’s experience was not 7 weeks, it was at least 14 weeks, and appears to be ongoing.
I was also disappointed to see the phrasing “leaving him feeling unable to function”. Whether intentional or not, this obliquely implies doubt over the physical reality of his experience, and might be interpreted as suggestion of a psychological cause, a claim he has refuted, stating “this is not anxiety” (https://twitter.com/PaulGarnerWoof/status/1280065744299057152). If a condition exhausts its victims after minor exertion, they don’t *feel* unable to function, they *are* unable to function.
Careful communication matters, and these syndromes come with significant baggage. Too many ME/CFS patients have been told by society and medics that their condition is psychosomatic, resulting in dismissive responses from parts of the medical community, poor support, and a lack of basic research into the biological mechanisms at play. We must not repeat that tradgedy with 'LongCovid' victims.
A failure to acknowledge and recognise the reality of ‘LongCovid’ victims' experience risks gaslighting a swathe of patients, and pushing them to seek help from unscientific, and sometimes abusive practitioners.
We may not have answers to the cause of these people’s suffering, but we can at least acknowledge their experience as they describe it while we research, and hopefully find, therapies.
Yours Sincerely,
Peter White
Competing interests: No competing interests
Long covid and fibromyalgia or Chronic fatigue syndrome
Dear Editor
I am a retired Italian doctor who, for the last few months, without the certainty of having had Covid, has been presenting the symptoms of Long Covid syndrome.
I am writing to propose the hypothesis that Long Covid syndrome occurs in people who have a tendency to fibromyalgia or chronic fatigue syndrome.
The symptoms of fibromyalgia and of chronic fatigue syndrome are very similar, if not superimposable to some forms of long Covid Syndrome
As we know, the causes of fibromyalgia are unknown, but it is certain that, at least in part, they are linked to a pain control dysfunction, which in turn is linked to a genetic and stress-facilitated deficit in opioid production and to a dysfunction of the central dopaminergic system of pain control.
If this were the case, it would be interesting to study patients presenting the Long Covid syndrome with the same methods used to study people with fibromyalgia.
What I’m proposing, therefore, is the following: that it is not the Sars-CoV-2 virus that determines the Long-Covid syndrome due to some peculiar characteristics of the virus itself, but that it depends on the predisposition of the affected patients to the still mysterious condition of fibromyalgia and/or of chronic fatigue syndrome.
Best regards
Competing interests: No competing interests